Jon's Journey

A Visit from Liam

2011-07-29T20:40:00.004-04:00

Wednesday Carol and I went to see Jon. Since she was babysitting his nephew Joe's son, Liam, we took him along. We had a good visit. Jon thought he recognized my car pulling in the drive when he was coming out of physical theapy so he was waiting for us in the lobby. We went into the activity room where the finches and doves are and Jon pulled into his usual laying back position. I couldn't resist temptation. Liam has learned to balance himself in a sitting position so I scooped him up and put him on Jon's lap. They had a good time checking each other out.

Jon says he's back to working with weights in therapy. I took his electric toothbrush so maybe he can add that to his occupational therapy sessions for a few days when he gets the hang of it back. Jon continues to look good. Have heard no complaints so far--of course my hearing hasn't been so good these last few months so maybe I've just missd them.

Miscellaneous Thoughts

2011-07-25T21:28:00.003-04:00

A call from Mother reminded me that I haven't updated for a while. Carol and I visited Jon yesterday and are pleased to report that he looks great. He is eating pretty much by himself after he gets the appropriate silverware in his hand, is sitting in his wheelchair and looking comfy, is going back to bed early in the evening as recommended without a squawk and in general doing very well. He's back to going to therapy. The chair will be having new pressure mapping in the near future. Something finally triggered his memory as to where his disability checks have been going so we've got that all squared away also.

There was a car show next door last week-end and Jon was all set to check it out when someone checked the thermometer and their weather policy and deemed it too hot for the group to go outside. Can't help but think how that might have prevented some of the problems of last summer!

Speaking of being hot, does anyone know how to find past temperatures for the month of July for this year? It looks like we are slated for another week of 90+ temps and it seems like we've had a run on them all month. Hope all of you are coping well.

Catching up

2011-07-09T13:24:00.002-04:00

I knew I had become lax again but didn't realize how much! My apologies. Jon has been feeling pretty well this last week. For one thing, he was accepted by Heartland of Waterville and was moved there after dinner Wednesday evening.

It is barely inside the south limits of Waterville at the end of a small road which also is home to a Masonic Village. The rooms are small and he has an elderly gentleman for a room mate. Carol and I had visited on Thursday and were there at supper time. He didn't think he was going to get real food until Friday but what he was given was mostly soft food; bread with gravy and small chunks of chicken, mashed potatoes and gravy, cooked carrots, pea pods etc. and after several tastes I declared it to be a strawberry crisp. He ate most of the bread and gravy, only a few bites of potatoes--it seemed awfully salty!- most of the veggies, his milk but turned down the dessert.

Carol and I had visited on Tuesday at Liberty and when I left I checked his Foley bag to see how everything was going. I was amazed to see chunks of stuff in the tube. I took a picture so I could show Jon and as I was leaving I showed one of the staff. She immediately went down to check it herself and said there were a number of things they could do but did not elaborate. When I left yesterday I noticed there were still some floaters in the tube and said something to the nurse. His night LPN called at 5:50 a.m. Saturday morning morning (she gets off at 6, I think) to tell me they had sent a urine sample out for testing but results wouldn't be back until Tuesday so they wouldn't know until then which antibiotic to give him.

Yesterday was his birthday. I took Greg and a mutual friend of his and Jon's to Waterville to say Happy Birthday and spend some time with him. Barb came up and Greg passed her on his way home. Jon ate about a fourth of his sandwich, it was supposed to be steak? but sliced very thin and he didn't want the green peppers and onions that came on the side. It didn't look that great to me either. No to the soup, cake and only ate about 4-5 tator tots.

Physical therapy came in and worked on his legs so I'm glad to see therapy continue. Somehow we took Liberty West at their word about the status of the bed sores. True, they are much better but somehow a third one on his rear was never mentioned. He has spent so much time laying at the same angle that somehow it doesn't surprise me but still it would have been nice to be informed. The one on his leg is pretty much healed.

Am still worried about another urinary tract infection. The first results of yesterday's analysis shows he is positive for an infection but they still won't know until tomorrow at the earliest which kind of bacteria they are fighting. It's amazing how many different kinds of antibiotics they have which are tailored for the various bacteria...no genetic forms there! He was running a slight fever.

Today we're all going up to officially celebrate both Jon and his dad's birthdays...Bill's is today.

Have things to do for today so I'll sign off for now--may have another post tonight.

Something -things is/are missing?

2011-06-24T23:35:00.002-04:00

When I walked in Jon's room yesterday the first thing I noticed was that the rails were off his bed...if the rails are missing so is the Camelbak that hangs on them. When I found it it had been taken apart. Strange, it was like being at home; no one knew who took it apart or why, some of them weren't even working the day before. Seems the rails became loose and fell off; Jon couldn't get the new mouthpiece on the water bag to work so I guess someone was investigating how it was put together(?) I got it back together and put the old mouthpiece back on so when the rail goes back up itt is ready to go.

After visiting a while, Jon said, "they took me off the oxygen today" and that's when I noticed they had also shaved his mustache. He had been off the oxygen for 4 hours and was still maintaining an oxygen level of 96. Had him do a couple of his breathing exercises which he really needs to keep up. He was really upset about the mustache bit--seems they were originally just going to "trim it up a bit." I told him I couldn't get over how much younger he looked without it. Don't think that cheered him up much though.

He was also disappointed with the news that it didn't seem like he would be going to Golden Living in Napoleon--they weren't sure they could "meet his needs." I'm having the social worker check out 3 places one of which is another place in Napoleon. He really wants to be in a new place by his birthday (July 9). It would be so much closer for everyone and for family get togethers in the summer. It would be handy for the 2 fellas working at Campbell Soups; they ought to start working 7 days a week pretty soon.

I'm leaving for Chicago and NEA Retired convention on Sunday so unless one of the gals goes up and wants to leave a post you probably won't hear anything until late next week.

Hope all is well with the rest of you.

At a loss for a title-sorry!

2011-06-22T22:48:00.003-04:00

Carol and I visited Jon yesterday. Carol massaged his hands and I soaked them and trimmed his nails. Angelique had found a neat hose for his Camelbak water bag that bikers use to hold it in position. We thought it might work well with Jon in several different ways. It is thick enough he can grasp it more easily with his hands when in the splints or if it had enough stiffness to it he could have it pretty stable and close to him. He fussed and fumed a bit. Said he had just figured out how to manage it by himself--refrained from saying I knew he would given enough time. I reminded him that any new adjustment usually took some time to adapt to and by the time we left I think we had a workable arrangement. Thanks, Angelique, for your thoughtfulness!

I also cleaned and sterilized the water bag so its good to go for another week or two. Also fixed the fan. It had been knocked off the stand a few times and rattled like crazy. Finally took it apart and tightened everything up and got rid of most of the noise. It seems like the low speed is awfully fast and high makes it look and sound like it could take off for open spaces all by itself!

Jon was up in his chair for 30 minutes yesterday. They used a transfer board to get him in the chair. I also noticed a lift in the hallway but didn't ask if they had tried that first or just had it handy if the transfer board didn't work. He had gotten all the way to the fifth step in eating at the hospital and when he got back to Liberty he said he tried to eat but the meatloaf didn't taste anything like mine so he decided to forgo food for a while. His logic is driving me crazy! (Didn't know he liked mine all that well, either...) Also claimed he couldn't feed himself while in bed and I asked if they wouldn't feed him. He said some of them had said sure and others acted like "no way!" Doesn't matter I guess since he seems to have given up already.

He got a chance to talk with several of his friends. Carol's cell phone is easier for him to use than mine and whenever she comes he spends half his time on her phone. Such is life. Will visit tomorrow, Carol has to work so will probably go by myself. Take care.

Back at "Home," ....Again

2011-06-19T00:03:00.002-04:00

Jon was sent back to Liberty West about 5 o'clock this afternoon. I had been feeling guilty about not getting up to see him on Friday and had been busy all day today but headed toward Toledo about 6. Someplace along the way it dawned on me that visiting hours were over at 8 but I decided to go ahead. (I had a Father's Day card for nephew Joe for him to sign--Joe will think that's neat! I got to the hospital and went to the desk to double-check on his room number and the nice person at the desk said they had no record of his being there so I headed back to Liberty (thank goodness it's just a matter of blocks) and called ahead to make sure he was there.

He looked really rugged; could hardly talk once I woke him up and was sleeping with his mouth open and his chest jerking with every breath. I immediately got the nurse who told me he was breathing like that when he came back. I assured her that it was not his normal breathing and usually signified something was wrong. I had already checked the urine and it was fine. She said she had just done his vitals and his oxygen was 99 but checked them again for me and his oxygen level was 88 so she upped the flow of oxygen. I assured her I wasn't leaving until his breathing improved and a half hour later told her it was the same. She checked his oxygen level and it was back up to 99. She listened to his lungs and stomach and declared them both ok. I called Barb and asked her if she remembered what Westerville did when he breathed like that and she said they either gave him an inhaler or a breathing treatment. The nurse said he did have orders for the inhaler so she gave that to him. A half hour later his breathing was much smoother, his head was not jerking back with each of the"kicks" in his ribs and the kicks themselves were considerably less strong so at 9:00 I headed for home.

Thanks for checking in. Hope you have a great Sunday.

Let's be Hopeful

2011-06-16T21:35:00.003-04:00

Carol and I went to the patient care meeting and asked many questions. But many of them refered to a behavior management program which can only be administered through the psychiatrist and Jon refuses to see him--Jon still does not believe he has any problems--at least not ones that need work on! I get the feeling they still think Jon is getting enough fluids even though the color of the urine would indicate a lack thereof. They will try to give him a larger glass of water when they give him his medications. The chair did safely arrive and is stored. They emphasized he will have to get back in bed several times a day.

We went from there to St V’s to see Jon. He was being exercised by the occupational therapist and she put his arms through a range of motion workout. She did a little work on his feet and legs.

The cute nurse asked if he would like to try eating some food. He agreed to give it a try since he didn’t want to spend the rest of his life going around town with a food tube hanging on his chair... actually what he said was he’d like to someday be able to eat another Big Mac. She explained that starting food was a process of moving through the 5 stages of food types: clear liquid, full liquid, soft, medium(?) and anything he wants. That was also influential! He ate about a1/4 of the jello, some of the soup, 3/4 of the Ensure Enlive and a few spoonfuls of the cherry ice. If there are no problems he goes to the next stage. Of course he had the nurse feed him (there was no adaptive silverware so someone had to do it.)

His vital signs are much better today. The staff were more comfortable with his blood pressure readings which were up. That 51 figure referred to yesterday stands for the “mean arterial pressure” which needs to be 60 or above. When we arrived it was 64 and when we left several hours later it was 75. The blood pressure on our arrival was 117/43. His urine is much clearer but still reddish. He was more alert and didn’t fall asleep at all. As long as a person kept the conversation going Jon stayed in it. He had a fever today of 100.6 when we arrived but when we left it had fallen to 98.7. Still is a little high for him since normal is somewhere in the 97 range. The white blood cell counts have fallen considerably, from 50 to 20 and from 26,100 to 11,400.

He did not have a central line inserted because his blood pressure started to rise and stabilized last night shortly after we left. Yeah! His IVs have been changed to mispenem cilastatin and norespinephrenine bitartrate. Earlier today he was taken off levothid and put on tobramycin. Then later tonight they started him on primaxim--don’t know if that replaced any one, or all the others, or not. This infection is still a form of gram negative bacteria but is called proteus miribilis.

When we called for a 9 o’clock briefing we found that he had been transferred out of the ICU to the fourth floor, room 404, another step forward. Hope they keep him long enough to have this one thoroughly licked.

The nursing home in Napoleon has backed down somewhat and said there were other issues other than the bedsores and would check with the administrators again. I thought yesterday they said it was stabilizing his risk of infection but there might be something else involved.

Thanks for checking in, hope your summer is off to a good start. We’re still planning on celebrating Josh and Angelique’s birthdays, Father’s day for Bill, Joe, Marty and David on Sunday.

Oops? Not again!!!

2011-06-16T01:31:00.002-04:00

How fast things can change! Thursday I was so pleased with how things were going. Saturday my Mother and and sister, Peg, came to visit Jon. He was sleeping when they got there and seemed sleepy after about an hour so they said their goodbyes.

Sunday, Barb and her dad and Greg and I went up to visit. I noticed his urine was getting dark again and even had a few “floaters” in it. He assured me he was getting enough fluids and that the staff thought so, too--between the liquids with meds, his drinks at mealtime and whatever drinks he either got from the Camelbak or he asked them for.

Monday, I had a meeting in Perrysburg, about 20 minutes away from the Liberty Nursing Center so I decided to make a quick run his way to see how things were going. Angelique and Jeff had stopped by on their way home from a trip to New York. I was mortified at the color and the amount of cloudiness (4 inches or so) in the tube. I just lifted the foley bag to show it to him and he snapped at me-- so I left. Before leaving the building I asked one of the staff to check on him after his company left and see how he was doing. I reminded her that the infection he had never really goes away it just needs to be under control and he had gone very quickly from being incoherent to just plain out of it!

I really expected to receive a call during the night so I didn’t sleep well Monday night. I did call though in the morning to see how he was and if they were keeping track of his output. While the gal was searching for that info I explained why I was concerned and when I got to the 4 condensed inches of cloudiness she gasped. She said that they could probably use extra fluid when they flushed the feeding tube to get more liquids in him and I agreed it would be a good idea. Ten minutes later she called and said that St. V’s had discontinued the cranberry capsules and she could start those up again and I thought that would be a good idea, too.

Today, actually yesterday but to be exact Wednesday, Carol and I stopped by for a quick visit. As I was parking in their lot I got a call from Liberty saying he had gone to the hospital for an appointment with his wound care doctor and then commented about how his stomach had gotten bigger. They took his blood pressure and it was low enough they agreed with him that he needed to go to the emergency room, again!

So, off we went to St.V’s. When we got there they had already taken 5 vials of blood, 2 samples of urine (very red), then he had x-rays of his stomach and chest followed by a CAT scan of his tummy. He had 2 IVs put in; one for 2 antibiotics (cipro and cefetime) and another for something to help with his blood pressure. At that time it was pretty obvious he was going to be admitted and probably to ICU.

An ICU doc explained that while he was admitted to the ICU he would not be under the care of that staff since he was not in quite the critical condition he was in 2 weeks ago. Instead he would be under the care of the infectious disease staff. A while later when we were allowed to see him the nurse sounded like he was indeed back under the critical care staff’s care since his blood pressure had not responded like they anticipated. His infection is systemic or septis meaning it is through all his body. He would need another central IV line like he had last time and probably in the neck again...something that Jon was very unhappy about. I imagine that any movement of the head irritates the area around it. Last week I had kidded him saying that the marks left on his neck made it look like a very thirsty vampire had attacked him!

Just before we left the results of the blood test had come back. His white blood count is 26000--two weeks ago when he was there it was 18000! The blood pressure numbers are 82/37. However, there is another number that goes with that that neither Carol nor I understood and that was 51. While we were there it dropped to 48 and what they were aiming for was to get it up above 60! That’s what brought on the central line--the medicine will be levophed.

That’s about it for now--time to hit the pillow. The chair has made its way to Toledo, the patient care meeting is still on for tomorrow at 1 and the place in Napoleon says they will take him once he gets into a stable condition. Neither Napoleon or Defiance hospitals have an intensive care unit so he would have to be taken to Toledo anyway if another problem developed.

Take care...

Jon Meets Liam

2011-06-09T23:07:00.003-04:00

Jon was perhaps in the best spirits I've seen in ages. His face looks good, his voice is strong and he's been doing some exercise on his own. Since he has come back from the hospital he could have some therapy start up again and they put some weights on his wrists while doing some exercises. He has obviously been drinking quite a bit of water which is great--even if he slacks off a bit.

I exercised Jon's hands and he even asked to have his legs and feet exercised some also. Every little bit of directed movement helps to keep him flexible. I think I have forgotten to mention that Jon is still on oxygen and is supposed to be blowing on the "pickle" daily to strengthen his lungs. He also has a breathing meter but we only did the pickle today.

Joe (sister Carol's son) and Jenny came shortly after I arrived and brought Liam. Jon has never seen him yet, only looked at pictures on our cameras. We played airplane with him and Jon was able to give him a few smooches on the cheek. I tried sitting Liam on the bed close to Jon but couldn't get the baby in a comfortable position.

Supposedly getting the chair up to Toledo is back on the plan but I'll believe that when their van drives into my driveway!

Home-I guess that's what this is.

2011-06-09T12:39:00.003-04:00

This was Jon's comment we overheard when he was talking with his dad on the phone. He has been moved back to Liberty West. He's feeling much better although I'm still convinced he's having some thought process difficulty. He's well aware of the seriousness of his latest UTI. There had already been some damage to the kidneys before this last infection and new damage showed on the CAT scan. However, I'm still not sure we've convinced him how much water is enough. Not sure the staff is helping either--they seem to be giving the impression he's getting plenty of water....

Have again asked for a patient conference, this time with the social worker who was on vacation when I asked the assistant director of nursing about setting one up. I'd like to see him on some combination of food and the feeding tube if we can't go back to food and ensure. One of the reasons he stopped eating breakfast was he'd gained some weight and figured that could be a solution.

Am going up today...will keep you posted.

Not quite there yet-but moved

2011-06-06T17:07:00.002-04:00

I took the day off today and didn't go to Toledo but Jon called and said they had moved him from the ICU to room 430. Progress is being made if ever so slow! Was reading up on Urinary Tract infections (UTI's) and found that for people with spinal cord injuries the UTI's are among the most life threatening conditions....and the best advice, which he hates to hear, is to drink water; drink, drink and then drink some more is how the article put it!

Carol and I are going to see him tomorrow so we'll have a better up-date.

Improvement Continues

2011-06-05T22:02:00.003-04:00

On Jon's board on the wall have been his goals for his stay: Safety (I imagine that refers to quit batting the tube in your mouth!), Comfort, and Extubate with two exclamation marks. When I walked in today I noticed that he had no tube in his mouth so the third goal has been met! When I saw the machine being rolled out of the room we knew it was official so I went to the board and drew a smile under the exclamations to make a smiley. The only disadvantage I can see is that he started coughing quite a bit after his breathing treatment. That may have partially been the goal of the breathing treatment but he really sounded quite congested.

We had a short talk about his stay. He couldn't remember his/our first night there--but that was to be expected. At first, he wasn't quite sure he remembered the second time Carol was there and needed to be reminded that Angelique was with me yesterday. He is hoping he can leave there tomorrow-in fact, he is sure he is but he doesn't always get his information straight.

That's about it..he looks like Jon, talks like Jon and can occasionally be cranky like all of us! Wish him luck on leaving soon!

Things are looking up :)

2011-06-05T08:18:00.002-04:00

Angelique and I went to see Jon yesterday and caught him in one of his awake periods. The nurses were busy with him when we first arrived so we had to wait outside the room. This gave us a chance to "eavesdrop." They were telling him that they would try to start the "weaning" process with the ventilator tomorrow (today)...he is sooo anxious to get rid of all that head gear. Evidently he has been batting at it because not only was it fastened securely to his head he had cloth strips loosely tied to his wrists that allowed for movement, but not enough so for him to reach his face! Not only does he have to keep his oxygen level up when breathing on a reduced flow from the ventilator he has to be able to produce a "productive cough."

He was delighted to see us. Angelique is much better with lip reading than I but when he has stuff in his mouth it makes it very difficult--even for her. When w asked him to spell the words we weren't getting the nurse produced a flyer that has the alphabet. He can point to the letters to spell the words. Usually it just takes a few letters at the beginning of a word. He got a "k" and an "i". Angelique kiddingly said "the next letter better not be an "l" and he shook his head violently. I guessed "kiss" and he nodded just as vigorously for a yes. So we both gave him a big smooch.

His urine looks quite normal now-just a little dark. The nurse said occasionally it still has some clouds but on the whole is much better. She also said that part of the explanation for his unresponsive state when we first saw him Thursday night was due to the urine backing up in his system. Add to that the drainage of so much urine at one time is hard on the body also. So I guess he had had kind of a double whammy to the system. Kidney function is now normal.

They have resumed the tube feedings and he is tolerating them well. The other new thing we noticed were the "mini air bags" (not a scientific name at all but I can't remember what they are called!") They are long and fit on his calf and have the air pressure fluctuating to prevent blood clots. In all this time that he's been confined to bedrest no one has put them on him. He had them the first few months after the accident though.

Jon wasn't wearing hand splints--I have them in my car and they didn't ask about them. But I did notice that he was working his left hand. He can make some flexing movement but not much.

Jon will likely be in the ICU for at least 1 or 2 more days. He might be transferred to the "step down" unit or be able to go back to a nursing home level of care. Nurses can't second guess that! Still haven't run into a doctor except for a very brief meeting on Thursday evening.

It was good to see him awake. He was quite tired after a half an hour so we left.

Barb called this morning to check on how he was doing. The nurse said he was keeping him busy with "commands." She hurriedly explained it wasn't necessarily a bad thing he just needed repositioning or the TV channel changed. She also said he slept well and did not indicate any pain. Food tube is running at 50 mL an hour. If he tolerates that well it will be slowly increased every 4 hours.

I will be going to see him this afternoon so I'll see how everything is going.

A Listing of Things

2011-06-04T00:33:00.010-04:00

I thought I’d change my reporting today and just list the things I learned

While visiting Liberty West:

none of the 3 I was talking with were working yesterday so they didn’t know if he was unresponsive when he left

they were stunned to learn he was as sick as he is

his catheter had been changed at the end of May

they had a urinalysis done a little over a week ago and no abnormalities were found

I got a copy of his meds to take to the hospital--they asked about it last night but had not called to have it sent over yet

the bedsore on his leg is tunneling quite a bit and some go to the bone...so while the perimeter is getting smaller the depth is not improving.

While talking with nurses at St. V.’s:

Jon’s vital signs are normal and stable

when not sedated Jon is very unhappy with all the tubing and paraphernalia that goes with it--when he realized I was there he mouthed “take it out, now!”--we heard that lots right after the accident

when mildly sedated he can move on command and answer yes/no questions

at this time when asked about pain he said yes so they gave him a mild pain killer--had just administered that before I got there so he didn’t realized I was there

I observed that he can thrash his body quite well-especially when thoroughly frustrated!

his color is returning and he looks so much better

they cut his hair! I have been meaning to do that for two months but couldn’t figure out how to do that while he was flat on his back. They did it just before changing his sheets--it looks pretty nice

they aren’t using a wound vac...their wound nurse changed the type of dressing being used which is okay. if I remember correctly sometimes what is needed is a chang-up in the treatment to spur the healing process

he did have a CAT scan but there was only a preliminary report so I couldn’t get any details

his potasium level has returned to normal so there is no more need for extra calcium

did not have a chance to talk with any doctor

That just about does it--if I forgot anything I’ll report it tomorrow.

A Big Bump in the Road!

2011-06-03T03:11:00.009-04:00

It’s been a hectic day. Carol and I headed for Toledo to see Jon about 2:30 this afternoon. We were by-passing Napoleon when we received a phone call from Liberty West saying they were concerned about Jon’s distended stomach and were sending him to St Vincent’s for a CAT scan....he also seemed to be disoriented. As soon as they were done talking with me they were going to call and make arrangements for transport. Knowing how long that takes sometimes, and Carol had planned on using my computer to finish some things that needed taking care of, we decided to go back to my house--about a 15 minute drive.

Around 5 we got back on the road...we had checked with Liberty and he hadn’t left yet so we decided to stop and eat supper. When we were back on the road we called the hospital and he had just arrived. When we were at the exit and nearing the hospital he had just been sent upstairs for the scan. Remembering that Liberty had said he seemed “disoriented” we were amazed to see him completely out of it and on oxygen. His breathing reminded us of the early days in Ft. Wayne and Green Springs when his breathing looked like someone was kicking him in the chest. In talking with the nurse she said he was going to be sent upstairs to the ICU unit and would probably be in the hospital for 3-4 days. It seems he has a severe urinary tract infection which has gone into the kidney...which is also looking damaged. Not necessarily from this episode but possibly from previous episodes--possibly the accident? His condition was labeled septis (a severe illness in which the bloodstream is overwhelmed by bacteria.) When they drained the bladder it was loaded with pus. Then they checked his food tube which evidently didn’t look great either. They removed the tube connection and suctioned 500mL of thick yellow “gunk”-- a new medical term!

While we were there they inserted the dreaded breathing tube down his throat which had an immediate effect on his breathing, blood pressure and heart rate--bp had been low and heart rate high. While he is on the ventilator he will be sedated and pretty much unaware of what is going on. (We couldn’t rouse him at all.) They will however, take him off the sedation medication for a short time each day... to see how well he is doing(?)

He also has a special central line IV placed in the neck for medication and drawing blood. They were adding calcium to his medications because his potassium was high and calcium helps protect the heart. His meds include vancomycin, medazalom HCL/sodium chloride. We asked about a white blood cell count and the nurse gave the number 18 which she said was on the high side but not seriously so. Carol and I are confused because we thought normal ranges were much higher than that but she didn’t say which unit of measurement they were using. In looking up normal counts I found the normal range of 4,500-10,000 white blood cells per microliter (mcL) which sounds more like what we were thinking.

Visiting hours are from 10 to 12 in the morning 2-4 and 5-6 in the afternoon and 9-10 in the evening, 2 visitors at a time. He will however, be completely out of it and totally unaware of your presence. I will be using the blog much more to keep everyone posted. The blog address is www.jonpc.blogspot.com. His room is 115. Mercy St. Vincent Medical Center, 2213 Cherry Street,Toledo, Oh 43608-2691

Progress continues

2011-06-01T07:46:00.002-04:00

Again, my apologies for not keeping posts up to date. Jon's bedsores continue to improve. The biggest sore on his bottom is completely healed and the other is improving. It had a lot more tunneling and so it is taking long to heal. Still has the wound vac on it. Some days when I'm there it seems like hardly anything is moving through the tube. Yesterday, it was more visible. The dressing on his leg keeps getting smaller which means it is healing also. He goes to the wound doctor tomorrow so I should have a more complete report the next time I post.

He continues to be in bed all the time but yesterday was sitting up higher than before. The Center had said they would come after his chair but so far we seem to have missed connections. Talked with the nurse last night and she said she would see what the hold-up has been. Jon has permission to be in his chair for a couple of hours a day.

He had been getting some occupational therapy and they were working on being able to do more of the work in getting his shirt on. Had also been sitting on the side of the bed for ten minutes at a time balancing by himself. However, Jon had been switched from Medicaid to Medicare A and used all the sessions that were allowed so therapy was discontinued. The staff should be working to see if he can be switched to a different level of Medicare so they can resume.

Jon continues to be in fairly good spirits and there are no complaints from the staff which is good news. He is relying on the tube feeding and being picky about what he eats -- not good news! He can take phone calls and would really like to hear from people.

Thanks for checking in....

Progress--whooo hoo!

2011-04-09T20:05:00.004-04:00

Noticed the date on the last post and have to apologize. I didn't realize it had been so long since I updated this blog.

The wound vac situation is not as dire because one of the wounds has healed enough that it doesn't need a vac which is very good news. He went to the wound doctor again two days ago and he was pleased with the progress so far. I had seen the one on the leg and thought it looked much bigger than the original measurements but evidently it is healing nicely also.

Evidently when Jon was at St Joe's in Fort Wayne early in March they were concerned about whether Jon might be diabetic. I knew that when he first came to Victory that his blood sugar was being monitored several times a day--in fact, it was checked 4 times a day and then down to 2 and now is at 1. However, while at St Joe's they must have given him a glucose test because he is getting two insulin shots a day.

My mother and sister, Margaret Anne, came down two Sundays ago to see Jon and Angelique and her beau, Jeff, brought me up the week before that. Carol tries to come with me on the weeks she has 3 days off in a row. The drive can be rather long -- not as long as to Columbus--but I'm usually there an hour and a half before turning around and coming home but I do make it up at least twice a week.

I've been disappointed in the occupational therapy, or lack thereof but Jon lets us work on his hands when we come. Thursday he said that a nurse worked on his feet, probably the first time in almost a month.

When I came up yesterday I was chatting away and he said very seriously, " Mom, they came in to wash my face today and they scrubbed so hard...so hard that all my hair came off." I hadn't noticed that he had had a shave and the beard was gone! It was getting scruffy...his words...I thought it had already gone to scruffy long ago so it was a wonder I hadn't noticed it right off the bat!

Carol had been talking to an aide who worked at a place in Napoleon and made a contact to see if they would accept Jon as a resident. It would be a 15-20 minute drive for us instead of an hour and 15 minutes. Unfortunately, they thought the wound on the leg and two wounds needing a vac was beyond them and turned him down...on the same day he was taken off one of them! We're thinking as long as good progress is being made where he is that we'll stay put and move him when things are looking even better. The fact that he is on zosyn, which is quite expensive, may also have been a factor in their saying no. I know it was when we were trying to come up to Defiance.

There has been a change of attitude...long periods in bed lend themselves to some thinking and he now says he "really blew it" while at Brookview. I think he's only thinking in terms of not following their advice with going to bed more often and staying there when it was advised and not his behavior in general, however, that would be an extremely welcome change of mind, also.

He would like company and now since the weather should be turning nicer you might think about taking a drive his way. The place is just 6-7 blocks away from I 75 and very easy to find.

Warmer weather is coming, warmer weather is coming, warmer weather is coming---suppose I should stay away from some of the rallies I've been attending?

Spring Can't Come Soon Enough

2011-03-28T22:38:00.004-04:00

Went to see Jon on Saturday and found that the wound vac wasn't working. When Carol and I left on Wednesday we thought it was signaling that there was a leak. However, they said there was a part that needed to be replaced so he was only on the wound vac for about 36 hours. He was also having some problems with his digestive system that he had before when he was on tube feeding...we always said "liquid in, liquid out..." They're working on fixing that. I went to Toledo today and found that the wound vac still wasn't hooked up although when I left that was on their "to do" list for the day. They were changing the dressing on his calf and I asked if I could take a peek. It looks like it has increased at least one centimeter in both directions. Very red which I guess is a good sign of healthy tissue. Also just before leaving a pain management fellow came in to see how Jon's pain level was doing. I pointed out that one of the reasons he was wearing his hand splints all the time was because they didn't hurt so much with them on. It was decided that Jon's level of neurotin could be increased to see if that would help. Jon is still trying to keep a "stiff upper lip." He's not happy about being in bed all the time, I know but he's not complaining--at least not to me. I still have to bug him about keeping the blinds open so he's not in a "cave" and I was surprised that he didn't have the TV on. In fact he was complaining about the loud TV across the hall. Other than taking spells of wanting frequent drinks I've not heard any complaints from the staff.

It's almost April and I sure wish the weather was acting like it...although some place in the northeast they had another bout with snow and we haven't had that, thank goodness!

Geting Settled In

2011-03-24T15:04:00.003-04:00

Stopped to see Jon twice this week. While I was there on Monday I taped a short video to show his Grandmother who has been very concerned about his progress-and my status. Since it hadn't rained like it was supposed to, I decided to take a quick run to Dearborn. Didn't let her know I was coming-just knocked on the door and there I was! The picture is small on a cell phone and the audio wasn't the greatest but at least she has some idea of his state of mind. Stopped back at Jon's on my way home for a few minutes and saw that his cousin Jonathon had been there. Unfortunately, Jon was either napping or had his eyes shut and Jonathon didn't wake him up. My Jon says if that ever happens with anyone else in the future--please wake him up! He doesn't get that much company and he appreciates each and every visit.

Carol and I stopped by after keeping me company at an anti-collective bargaining bill rally out on the shore of Lake Erie--we nearly froze to death! 38 degrees without factoring in the wind! I have bemoaned the condition of the Maumee River with the water that looks like a sandy liquid, but didn't realize the lake had started to look the same way! Lake looked as brown as can be.

Jon was visited by the occupational therapist on Monday while I was there. She doesn't like his splints so I imagine we'll have still another pair turning up soon. The therapist does an evaluation and works with him for 2 weeks and then turns the therapy over to restorative care. Then 3 months later another evaluation is made and the procedure repeated. Wish it had been like that at both the last two places although in all fairness to them he has been known to turn down therapy...

Hasn't had a swallow test yet. Jon says they're waiting until he can sit in a chair before they let him eat real food. Makes sense since an air bed or any of the specialized beds don't really let the patient get in a good upright position.

He does have a wound vac on the largest of the sores now. It was put on on Tuesday. Hopefully that will speed up progress although as deep and wide as it is it has a huge way to go!

His scalp and face are itching like crazy again. Can't get enough scratching and we can't do it hard enough so I'm checking out my list of previous medications he's had and will suggest they look into it.

The sun is shining and sky is blue...certainly hope someone has made sure his blinds are open today.

I'm so Lonesome, I Could Cry

2011-03-18T19:52:00.003-04:00

Jon's is facing his first new move without much family around. While in Columbus Barb, his dad and I were there quite often. When he came to Defiance, he had his chair and was fortunate to know many of the staff, some of whom went to school with him and he had his friends who came around once in a while. Here in Toledo he's confined to his bed--his chair is still at my house, so he can't demand to get up--and he knows no one. He likes having his door closed which doesn't present an inviting atmosphere either. So at the moment he is going through a big dose of loneliness. I did notice today though that the blinds were open which is a plus...and the nurse informed me they like to keep the doors open although I don't know exactly how it keeps getting closed unless they don't have it open all the way.

I made a quick trip up today and spent more time with staff, signing papers, than I did with him. Seems as he is hitting the buzzer quite a bit asking for drinks. He evidently asked someone to put his Camelbac water bag on the dresser for some reason. I immediately had ice put in it and re-installed it on the side of the bed. Even had him do a couple of trial runs to reassure him that he can do it since he thought his hands splints were in the way.

I'm surprised by the splints...I've never seen him wear them as often as he has been the last few weeks. He has several sets and decided he didn't like the ones he was wearing so Greg found a different set in the garage for me to take to him. I'm not at all sure they were the ones he wanted though. I offered to put them on him but he asked to put them on the shelf...he gets to take them off in the afternoon so he'll probably change then.

While there I signed papers for him to have a wound vac on the largest bedsore. I also noticed that he was on his side. The last time I saw him he was flat on his back. The room was a little on the warm side and I was somewhat concerned when I saw how much he was sweating. I pointed out that fact to the nurse and suggested that she might check his blood pressure to see if he was going through autonomic dysreflexia.

I had to leave before either the wound vac was "installed" or before a blood pressure check was made. On the way home I received a return call from St. Joe's concerning Jon's eating order. The nurse reassured me it was okay for Jon to eat and I suggested that the new place probably wouldn't take my word for it and would she call and let them know. She said she would so hopefully he had supper. First, they have to find his divided plate and silveware, though.

You can tell Spring has come; not only is the weather warmer, the road crews filling potholes and the surveyors are out in full force, slowing traffic down!

Have a good weekend.

The Week that Was

2011-03-17T12:45:00.005-04:00

To catch up on the last post. Jon does have pneumonia but they decided against a bronchostomy evidently, because no mention of one being done was in his chart. His largest bedsore is down to the bone and actually the bone is infected. Another case of osteomylitis! Had one while in Columbus late in '09. While in Ft. Wayne Brookview would not take him back due to his behavior--coming in late, smoking more often than allowed, not following doctor's orders, etc. His ombudsman, Cretia, filed an appeal and a hearing was set for a week ago Monday. With 30 pages of notes on his behavior it didn't look well. The social worker at St. Joe's is not familiar with facilities in Ohio so it was pretty much up to me. I've been fighting a cold and Senate Bill 5 which does away with collective bargaining for teachers, firemen, policemen and all other public workers so my time and energy have been divided.

This week has been crazy. Angelique, Jeff, Greg and I went to Ft. Wayne on Sunday and I checked with the nurse to see if there was any sign that he would be discharged yet. She checked and couldn't find anything but did say they were trying to get his blood pressure stabilized. However, On Tuesday, I received a call from Cretia saying our appeal had been denied. It was quickly followed by a call from the social worker in Ft. Wayne saying they were discharging Jon that day and sending him to the facility in Toledo we weren't crazy about. I tried to say we didn't want him there but it was to no avail. I called back with several names of places she could try but about noon she said it was too late, he had already been discharged and "was out the door as we speak."

"Well, out the door as we speak" is the infamous quote of the week! Tuesday's plans were for Carol and I to go to Toledo to check out a place that Brookview here in Defiance had said would take him. We were far from thrilled when we read their inspection reports for the last 7 times so we decided to go see Jon. Since the call with the social worker was around 12:30 we thought if we got there by 4:30 he probably would be settled in by the time we got there. We found the place, went to the reception desk and they never heard of a Jon Castanien, they checked the lock-down area where he would be and they had no word of him either. We called the hospital and he hadn't left yet! We went back across town to get a new mouth-piece for his Camelback water bag he uses to get drinks and stopped to eat. We still had an hour to kill so we decided to visit his Uncle Raleigh and cousin Eric. We joined them at Bob Evans and had a nice chat. Another call to the new place, Liberty Nursing Home, and he still wasn't there. Called back to the hospital and asked for the address. Seems they sent him to a sister facility several streets from the place we had stopped at. When we called them around 9 he had just arrived. Since we were both beat we decided to go back home.

Greg and I went to see Jon yesterday. This place is older but looked okay...and its inspection ratings, while not great, were at least better than the other one. We visited a while and Jon said he couldn't eat yet. Actually he said he couldn't swallow. I checked with the nurse and she said he needed a swallow test with the speech therapist and that probably it would be done tomorrow (which is actually today.) I reassured Jon that I was sure he could swallow--Sunday he ate a huge sandwich according to Angelique--and did he want to try a few swallowing exercises? We did some together including the silly repeating of the syllable, hee hee hee! in a voice as high as possible. Carol called today and they said the reason he needed the test was because Ft. Wayne did not include eating in their orders and since he came with a feeding tube they assumed he didn't eat.

In general, Jon was extremely quiet, didn't want the blinds open and had the door shut all day. The TV was on (NCIS of course) but his bed wasn't positioned well to see it. I regret not asking if we could move it to an angle--or at least turn on the TV in the other part of the room. He has no room mate. Jon stopped doing exercises with his neck when his original physical therapist left at Westerville and I'm not sure he can turn his head much at all.

That's all for now. I've probably left out some but you've got the gist of it. Have had trouble getting into this blog but think I've gotten things straight in my head now.

Looking forward to Spring as I'm sure most of you are, too!

(Jon's on complete bed rest and his chair is in my living room so he won't get getting about too much for a while.)

Back one more step

2011-03-06T22:02:00.004-05:00

This is Barb. Dad and I went to Ft. Wayne today and visited Jon at St. Josephs. We were there for about 2 hours.

The visiting hours are restricted from 6:30 to 8:00 both am and pm for distribution of medications.

Jon was in a good mood and pleased to see us. He sang me "Happy Birthday" when he saw me. While we were there the Respiratory Therapist came in and gave him a breathing treatment. She said all looked pretty good. Dad went down to eat and I fed Jon his lunch. He was eating well.However, about a half hour later, the nurse came in and said that due to having to increase the amount of oxygen they have been giving him in order for his oxygen level to remain above 95, they were going to do a chest xray and a blood draw. The blood draw would be to check for blood gas levels (the actual amount of oxygen in the blood) and to check his potassium levels. They are giving him antibiotics and potassium in his IV. When she said they were doing a blood gas draw and a chest xray, I looked at Jon and said "To see if you have pneumonia". The nurse turned to me and asked "Are you a nurse?" I said "No. I've just been with him from the beginning. He used to get pneumonia alot". She said "Oh, I thought maybe you were the one." Jon looked at her and said "No. That's my niece. She's studying to be a nurse". I looked at Jon and said "No. Angelique's not going to be a nurse." He looked at me and said "No. Joey's wife or girlfriend, going to be wife, Jenny". I said "Yes, she is studying to be a nurse. She's almost done with her studies." The results of the chest xray came back as we were leaving. She said "The xrays showed fluid in the right lung and we are going to put a percussion vest on you four times a day. Have you ever had one before?" Jon just looked blank. I said "Yes. You had one right after the accident to get your lungs clear". He said "I don't remember". After we left, Mom sent me a text. They found a dark spot on the xray and are concerned that it is food. He used to aspirate when he started eating solid food but it has been quite a while since he aspirated. They are doing a bronchioscopy tonight.

We will keep you updated as information becomes available. Please pray for Jon and his lungs.

Many blessings, Barb

Back to Square Two

2011-03-05T22:13:00.006-05:00

Jon has 3 pressure sores. We don't know how big they were before the surgery but after they were cleaned out, they are:

Right backside 12.5cm long (5 inches), 9 cm wide (3 1/2 inches) by 5cm (2 inches)deep.
Left backside 6.5 cm (2 5/8 inches)long, 3 cm (1 3/16 inches) wide by 4 cm (1 5/8inch) deep.
Right calf (not front afterall) 6 cm (2 1/2 inches) long, 5 cm (2 inches) wide by 2 cm (3/4 inch) deep.

The hospital considers him malnourished due to not eating breakfast and other proper meals. Therefore, he is being fed by a tube in his stomach. He was not getting the proper nutrition for the wounds to heal correctly. He is also on antibiotics for the wounds. They put the PIC line back in his arm.

He will be at St. Joseph's Hospital in Ft. Wayne for at least a few weeks in order to get the wounds healing correctly. The address is: 700 Broadway Burn Unit Room 9 Ft. Wayne IN 46802 Visiting hours start at 6:30 am. Visitors should not be contagious, if in doubt, ask for a mask since he is in the burn unit.

We don't know what level of care he will need when he gets out. He may need a higher level facility than Brookview. This is a giant step backwards. He went through so many levels of care in Columbus and finally had him at the lowest level. Our stomachs are still doing flippy flops. We don't think Jon fully understands the seriousness of his condition.

More snow... Bah hum bug!!

Will keep you posted, not on the snow but on Jon.

2011-03-01T23:18:00.002-05:00

Jon has a new pressure sore on the front of his leg. He still has one on his backside as well. He apparently has been going to Ft. Wayne monthly to have the one on his backside looked at & if necessary debried. I knew he had been once before but did not know about this trip. He told Greg. He is in the burn unit as that is a unit that takes care of bedsores in many hospitals. Will keep you updated as more information becomes available.

New Developments

2011-01-07T14:29:00.003-05:00

First of all I must apologize. Jon had become quite obstinate about sharing information with me. He didn't want the nurses telling me of any infections he had, trips to the E.R., what time he came in at night, what comments he made to the nurses, etc. Sometime in November I discovered he had a bedsore but he could never quite remember its size. When he joined us for Thanksgiving he had a wound vac. It apparently did its job nicely because around Christmas they removed it. He went to Fort Wayne to discuss the possibility of having a skin flap procedure where they cover it with some fatty tissue and then pull flesh around it to cover it. However, today he reported that he had another one developing on the other side of his rear and now is being turned almost every hour at night.

Greg came home one day in December and said that Jon was driving down the hallway and suddenly stopped and just stared for a little bit. He snapped out of it and said he had just fallen asleep. There have been several more occasions like this and one more serious that had him sent to the hospital for tests which included an MRI. Today, his nurse called to tell me that he had had yet another incident. He was unresponsive, eyes closed and his skin was pale and ashen. She couldn't rouse him until she rubbed his chest but then he fell back to being unresponsive again. Again, she massaged his chest and he came around and talked a little with her. She told him she wanted to check his blood pressure and he seemed to have lost his orientation and wasn't sure of the way to his room. His blood pressure was 82/62. I went over to the hospital and he said they had already done a ekg and it seemed ok. They ended up taking two different blood draws and two urine samples. His urinary tract infection seems to have cleared up as that sample was ok. The blood samples showed a potassium deficiency with a reading of .9 (lowest normal is 3.5 ) After 3 long hours everything else seemed ok. They gave him a "potassium cocktail" - my terminology, not theirs - which contained 5 dissolved capsules of potassium! and he was free to go.

Upon returning home I checked low potassium and one of the symptoms is fainting. When Greg told me of the first occasions my first thought was petite mal seizures, especially since Greg said his eyes were open. Perhaps they were minor fainting spells but maybe those were unrelated to today's issue.

To bring you up to date on other activities we hosted the Slawson Thanksgiving dinner at my church which made it much easier for us since there were 26 in attendance. Christmas we had at our house. We had 13 people for dinner which made for a full house-especially with Jon's oversized chair. A good time was had on both occasions. We celebrated Joe's 27th birthday in November at the house and Greg's at Brookview. Joe is currently awaiting the arrival of little Liam, who can come any time now.

At a Crossroads

2010-08-23T10:14:00.002-04:00

We are definitely in some kind of a quagmire here in Defiance. First, we had Jon wanting desperately to move out on his own and the doctor saying it was okay. With the home waiver program Jon could only get 14 hours of skilled help a week and as many of you can guess he needs close to that in a day. Jon is sure he can get any number of aides to volunteer some time when they leave work to get him out or into bed and he feels any number of friends would be willing to come help out in any other way whenever needed.

Somehow either we were wrong about the doctor's signing off or he changed his mind because now the doctor's saying Jon needs 24 hour care, i.e. a nursing home. If Jon moves out on his own now it would be against doctor's advice and he would not be eligible for any aides through the home waiver program. Jon is quite determined to be on his own where he can come and go at will. How that will sit with volunteers coming at specified times is quite beyond me. One of the other major problems is having enough money for deposits on rent and utilities so he has been seeking agencies which will help him.

If he had any plans for doing something constructive with his life the family would be more willing to help him through this. As it is, he seems preoccupied with gadding about town, putting himself in danger in the middle of the night; smoking, which is not recommended for a guy with diminished lung capacity; and running a tab at a local bar.

We are beyond disappointment, way beyond.

A Reprieve of Sorts

2010-07-30T14:04:00.003-04:00

Jon has recovered well from his bout of pneumonia. He occasionally coughs and get get up to 1500 on the spirometer- a gadget that measures lung capacity. It can measure up to 2500 but I don't think he has even come close to that.

As a result of police being called to help Jon when he passed out a week ago Jon was cited on two counts: open container and possession. He went to court today and as I gather from the judge's conversation with Jon the police were called as a medical emergency not a traffic violation. Due to a couple of other reasons that I'm not sure I have straight the charges were dropped and only court costs were assessed.

Jon has been busy scouting around for a new place to live. We have checked two places and I think maneuverability of his chair is going to be a big factor. Places with lower rent also seem to be older and have narrower hallways.

During his talk with Brookview last week he adamantly refused drug and alcohol counseling or any other counseling that make him a little easier to deal with. If he has always been a "my way or the highway" kind of guy then either he wasn't around family enough for us to find it as annoying as we do now or he has gotten much worse. He's also bugging me about a van so he can drive again--we won't even go there!

Thanks for checking in.

The Axe has Fallen

2010-07-23T23:16:00.003-04:00

Jon came back to Brookview yesterday afternoon. He is still coughing quite a bit but in general feels much better physically. Brookview scheduled a patient care meeting for later in the afternoon and the news was much as I have feared the last few weeks. Jon has continued to come in late and since he doesn’t sign out or in--or have an aide do that in his presence--it cannot be established as to the actual times he comes and goes and whether or not he has been gettingin earlier. Jon threw another monkey wrench into the works when he was carrying around an empty beer bottle when he passed out from his coughing spell. We have since found that the official blood alcohol reading was .03 which is relatively low.

In essence he is “grounded” since he cannot leave the facility without a member of the staff or his mother. He has a 30 day notice and must find another place to live. While it doesn’t surprise me it means a good deal of scrambling to come up with acceptable housing since he is adamant about not living in another facility. This may be a quite difficult feat to accomplish, considering many of the programs that might be of assistance require that he be homebound and unable to get out and about except for doctor’s appointments and such. Both the Social Security Office and Jobs and Family Services were closed today so making appointments to get info and help from them will have to wait until Monday.

Brookview just called as I was refining this post to say that Jon does have pneumonia and will be receiving zosyn intravenously every 6 hours.

Your continued support and prayers are appreciated. Thanks for checking in!

And We're Off to St. Vincent's in Toledo

2010-07-20T22:59:00.003-04:00

I got a call this evening from Brookview about 6:15 with the news that Jon had been taken to the emergency room at Mercy Hospital here in Defiance. Seems he had passed out and was unresponsive. Someone had called the police who called the emergency squad. They had to "bag" him--give him a hefty dose of oxygen--to get him to come around. By the time I got to the hospital they had already done a chest x-ray which came back clear and a blood alcohol test which had a zero score...thank goodness! Shortly after I arrived they did a quick EKG test. I was doing something for him-can't remember what and she was done and had all the "spots" off before I knew she had even started a reading! Didn't hear anything back on that test and I think probably it was okay.

They did another round of blood draws--3 vials divided among 6 bottles with each vial taken from a different part of his body. These were to determine if he has any kind of bacterial infection but the cultures take from 48 to 72 hours to "breed and read." (My terminology-not theirs!) They did start him on a course of antibiotics through an IV -rocephin. The phlegm that he had been coughing up was, in the current vernacular, "nasty looking" so something is going on for certain. There was one time when it contained what looked like an anemic square of tomato and he said he had eaten mexican for supper so it may be that he had aspirated and didn't realize it or thought he had it all coughed up. He had an oxygen mask on and I had a hard time understanding him.

I had thought to bring my health power of attorney papers but not his medicaid card so I headed home for that and his glasses which were still at the fire station. Before I left he asked me to empty his foley bag but the nurses had already done that. I was a little concerned that in 2 hours he only had about 25 ccs. When I came back in less than an hour it was up to 75 ccs so I was feeling a little better.

Jon's regular doctor is on vacation, of course, and the doctor covering for him was concerned that if Jon took a turn for the worse and needed more intensive treatment neither of the 2 hospitals here would be able to take care of him...so at 10:10 he was loaded into an ambulance and taken to St. Vincent Medical Center in Toledo which does have an ICU. Just before leaving he had a second breathing treatment which should have broken things up more.

Hmmm, forgot something and don't know where to insert it so here it is...it seems that he had a coughing spell on the way home from a buddy's and he leaned way forward to cough better but he couldn't get himself back up to a regular sitting position. This does something for a normal person's ability to breathe and certainly is not good for Jon and that's why he had passed out and was unresponsive when the paramedics arrived. He's missing his tank top so I'm guessing it got cut off--hope it wasn't his birthday shirt I just got him!

Thanks for checking in--the long spells between posts are mostly due to the fact that healthwise he's been doing so well. I've been bragging that he's not had anything major since the second week in January. i get discouraged with his other shenanigans and you probably don't need to hear about all of them anyway. I rented a van last week-end and took him to Columbus for his father's surprise 80th birthday party and he seemed to have a good time.

Thanks for checking in. He shouldn't be there more then 3 days or so but St. Vincent Medical Center's address is 2213 Cherry Street, Toledo, OH 43608-2801. Will keepyou posted.

It's a Start...

2010-07-16T17:10:00.002-04:00

Just saw the newly installed lighting system on Jon's chair today and must say it is impressive; lights under the front of the arms, under the foot rest so he can see the street, and flashers. He definitely will be more easily seen. I'm still concerned about the condition of the roads he chooses and the traffic on some of them but then, I'm a mom and mom's worry.

Anybody for a Game of Jeopardy?

2010-07-05T23:13:00.002-04:00

Jon had his second appointment with his rehab doctor. We took the dinky list of equipment the physical therapy lab has at Brookview but the doctor seemed to have forgotten that they had suggested coming to Toledo for a couple of weeks of therapy. When I mentioned that he checked Jon's triceps and again found that he has fairly well developed triceps on the left side but is woefully lacking on the right side. . . and the idea seemed to be dropped since again, Jon spent a lot of time talking about an operation at some time in the future. It seems a nurse who goes to the same church he's been attending works at Parkview where he was originally taken a year and a half ago. She told him some neurosurgeons there have been reattaching the spinal cord but he didn't catch their names, or the kind of operation, and the Toledo docs don't seem to keep up on that aspect of treatment--just rehab. Anyway, we came back home with an appointment in the future and no exercises for the hands or the arms. We were both disappointed. Meanwhile, I checked out a fitness center co-sponsored by Defiance College and the local Y. They seemed to think that they had some equipment that would be beneficial and he could work pretty much on his own. There is a trainer available for an extra fee which seemed fairly reasonable to me. Jon assured me he would check it out--sometime.

The rest of us are not too happy with Jon although he seems happy as a lark. He's out everyday by 2 o'clock and getting quite a tan. It seems there's not a friend in town that he can't manage to get to although he's been having some troubles with his battery necessitating someone pushing him up the Northside hill which is pretty steep--cyclists are more apt to walk their bikes than try to peddle up it. He's also gotten hung up on some railroad tracks. Even though they are seldom used it seems like some pretty scary stuff to me, even in the daytime, but these have happened at night. He assures me that the city has put some stone and tar at the crossing making it smoother so he shouldn't get stuck again. He also has taken to coming in rather late at night--Greg took the 2 a.m. call and went out looking for him and I missed a call at 12:30 on my cell phone. Without my hearing aids I can't hear my cell phone even though I keep it about 15 inches from my head!

We went to Walmart today and spent a considerable amount to buy lights, battery and charger, wire, reflectors, etc. which a buddy will use to make his chair more night-worthy. Someone reported that the police had stopped him because he was almost hit by a car but I don't know if this was a daytime incident or night time....I don't always ask for all the particulars! Friends and acquaintances fill us in on events they think we should know about even if there's very little we can do about it. Not sure how to ground a 44 year old man although the thought occurs to me that Brookview could refuse to get him out of bed--mostly I'm being facetious, but then again.....

He's also taken up all his old habits of drinking and smoking which doesn't earn him any Brownie points with us either. His reasoning is that it wasn't his choice to stop and he wants to see if "he can stop on his own." If anyone knows how to successfully explain "addiction" to him we would all be grateful. Our biggest fear is that if, at some point, an operation of some kind is feasible that his lungs would not be up to being exposed to anesthesia for the time period such an operation would require.

My apologies if I sound down and out...it is because I am. All of us put in a lot of time and effort in helping him to recover and we hate to see him seemingly throw it all away. His list of friends who he'll listen to seems to be getting shorter and not all of them are on the same page we are. Unfortunately, Brookview is getting quite perturbed with him and are worrying about their liability in all of this.

We need some magic fairy dust but heartfelt prayers will go a long way, too and we thank you in advance for them!

New Rehab Doctors

2010-05-18T22:24:00.002-04:00

Jon went to Toledo yesterday and met with 2 rehab doctors at the University of Toledo. One is an associate professor in the rehabilitation field. We talked for almost an hour--of course, we waited almost an hour before we saw them. I had prepared a brief history of the places we'd been, illness and therapy. We've been told before that the catheter should be attached to his leg to keep it in place and that it should be loose. When they checked it yesterday they felt it was still too tight. It seems that even though Jon can not feel anything on his leg the pain that would have been there kinda travels to other places he can feel, such as his hands which have been really bothering him lately. It can also affect the way his medicine works. They have proposed altering his medication and hope that his doctor here in Defiance honors that change. Another appointment for June 21 has been set and they will take some time to really check his records thoroughly. They also wanted a list of the equipment available in physical therapy so they could prescibe some specific therapy to work on. We've been interested in getting some training in using a transfer board. Many, if not most, quads at his level of injury are not able to transfer according to them BUT they were impressed by the movement, the strength Jon has in his arms and his positive attitude. There is one set of muscles Jon hasn't really worked on that is necessary to successfully transfer which they think he should work on. If Brookview doesn't have the necessary equipment they may take him for two weeks in their clinic and do some work. Meanwhile the object is to see if the new levels of meds and adjusting the catheter does the trick on the muscle spasms and pain he's been having. Jon did ask about a special kind of surgery that a Dr. Goldsmith in Nevada does with an omentum muscle(?) transfer but since they only do work on non-invasive techniques and rehab they quite honestly said they didn't keep up on the new techniques in other types of treatments.

Jon continues to be out and about, mostly in the afternoons and evenings. He has attended a couple of concerts and had a good time. He got caught in a violent storm one afternoon (there were tornado warnings posted on TV) and pulled up to the Center with a lapful of hail. Greg got there about the same time and dried the chair off and hung the cushion up to dry. Jon thinks that since the chair survived this storm that his chair is "waterproof."

Meanwhile there is much concern on our part concerning the path Jon has chosen to be an independent soul by restarting his old habits. After discovering burn marks on his fingers the Center has put him on a nicotine patch.

Hopefully the sun will come out soon, in actuality as well as metaphorically, and we can enjoy some sunshine.

More thank yous

2010-04-12T08:07:00.003-04:00

It's been a big week-end for Jon. So many people at my church have been asking me for updates on his progress that in addition to thanking all the various health institutions he's been in I decided to sign up for a coffee hour and bring Jon. The girls made cookies and came along to help serve (and clean-up!). The congregation seemed delighted to put a face to the name they've had on their prayers and concern list for over a year. Jon made a good impression on many of them and later in the day when I was at a Requiem performance they came up to me and commented on his great attitude. After we had the church kitchen back in order we all went over to Bob Evans for dinner.

On Saturday some friends of both Jon and Greg invited them over for a cook-out. The weather was cool but nice and they had a good time. The van he's been looking at was on the way there and back at home after being thoroughly checked by the lady's mechanic. Jon was allowed to get into the van but the door opening isn't tall enough for him to squeeze through. The lady still has her husband's chair which is much lower and Jon's got it all planned out that he can just have someone put him into the smaller chair to get into the van and then put the bigger chair on a lift in the back and then when he gets where he's going he can ride the small chair out and get put back into his regular chair. Sounds simple enough to him....

While his big chair has been a life-saver for him it's also beginning to be a pain in the neck. While it's designed to do many things it's not capable of riding up to a table and fitting under it so we have to take his tray with him or as in the case of spur of the moment plans to eat out Sunday one of us has to go back to Brookview and get it. It would be nice if the tray could stay on the chair and still be driven but somehow it interferes with the control panel. We're working on a flag for the chair. All I could find was a silly triangular bike flag that doesn't seem big enough to catch your eye and needs some special kind of rigging to fit onto the chair and still be taken on and off. For the moment we're just stuffing it down between him and the side of the chair that fits keeps him seated securely.

Thursday, Jon made the long trek to Antwerp for more dental work. A temporary bridge was put in place and he's beginning to be more comfortable with smiling! They've done a good job of matching his other teeth in color and look good. We found out on Sunday that the driver was Jon's nephew Joe's girlfriend's grandfather (whew!) was the driver. He hadn't recognized the Castanien name and I thought he was vaguely familiar but had only met him once at Thanksgiving a year and a half ago along wiith most of the rest of Jenny's family. Jon goes back to the dentist in early May for the permanent bridge.

Hope all is going well with you and yours.

Easter

2010-04-07T08:23:00.003-04:00

We had an enjoyable Easter. It was a beautiful day, warm and sunny. We were again able to secure a large room at my church which is also close enough for Jon to wheel himself there. We prefer to have someone walk with him on his journeys and Josh accompanied him. Everyone was able to make it except Bill (Jon's dad.) The food was good, the company great, the day fantastic!

Monday, Jon, Barb and I went to see a van that is for sale locally and again within walking distance. Jon had seen it on Sunday on his way to the church with Josh and the owner decided to send it to her mechanic to get it in shape for a test drive so we weren't able to see it right then. She let Jon get inside on Sunday and he is excited. It has nice big windows so he would be able to see out. Most times the windows are too low and he can not see much past the berm. It has a lift. The original needed replaced and the new one was installed one week before the gentleman died and hasn't been used in the last two years. I've not been happy watching him go up on the lift in the medivans--something about the balance unnerves me--and the chair's owner's manual does not recommend a lift. Of course, they also don't recommend that he be in the chair when it is in the process of being lifted which presents a problem since transferring him to a seat in a van could be quite cumbersome. Jon, however, prefers the idea of a lift. I'm not so sure he's thought through the process of getting hoisted into a van in bad weather and how much longer that takes than just scooting up a ramp, both for the him and the operator of the lift. Aside from having a lift, the gentleman's electric wheelchair was much closer to the ground and therefore he did not use any tie downs. He just sat in his chair and off they went. Jon asked "What about when you went around curves or turned corners?" She said he didn't move. Jon's sways unless he is tied down well. So tie downs would need to be installed.

From there we walked back home and Jon had a chance to sit on our patio and visit a while. I ran after some fixings for a cook-out and Greg fixed hamburgers on the grill. Closest thing he's had to "being home" in a year and a half.

Tuesday, Carol, Barb and I went to see the staff at Parkview Hospital's Intensive Care Unit, where Jon was life flighted, to give them an update on Jon's progress and thank them for all they did to make it possible. Barb has a new camera and wanted to try out the movie selection. So along with taking a card telling about Jon's progress, Barb took a movie of Jon thanking them and showing some of the things he can do. The nursing staff really enjoyed reading the card and seeing Jon in the movie. They said that when Jon has transportation, they would love to see him in person. Rarely do they get to hear about or see prior patients so they love it when they hear/see follow up. Since they are in critical care, not many of the patients remember them which is also hard.

Hope you are enjoing this weather. Everythings greening nicely, both the daffodils and the tulips, and the redbud trees are so confused they are blooming at the same time!

More Venturing Out

2010-03-20T10:59:00.002-04:00

Jon has had a busy week! With nicer weather he has been more anxious to be out and about. Last Thursday he made another trip across town to see his gal. Friday his sister Carol and her friend, Dave, took him to Findlay. His Aunt Betty passed away the week before and he wanted to go to the viewing. Not having a van capable of taking him they made do by lifting him out of the chair and putting him in the front seat of the car. Brookview loaned him a regular wheelchair to use. It seems there was some excitement while getting him out of the car. His cousin lifted him out of the car and tried to stand him up...Jon's legs buckled but thankfully he was caught in time before he could hit the ground. He had a nice time catching up with his cousins and looking through the many scrapbooks that Aunt Betty had accumulated during the years.

Tuesday was another nice day. I came home from some errands and noticed a group of people in the driveway around the bend. On closer look I saw that it was Jon and Greg. They had stopped on the way to the house to talk with a neighbor who also works at Campbells. Jon had wanted to check our garage for some things he left here. He is in the process of making his room at Brookview more homelike. He has about 4 of his nice pencil drawings by Albert Mukassa Wilson mounted on the walls (for those cousins living up north you might want to check his site: www.albertmukassawilson.com... If it's an Indian chief or has a motorcycle then it's a sure bet that either Jon or Greg has it!) There's also some of his Harley things that he had used to decorate his pool room when he had his own home.

Wednesday, he and his gal, Nancy, and other friends went to the Eagles for a St. Patrick's Day dinner. He passed on the sauerkraut and had a hamburger instead! Brookview has a van that will take him to local places so there was no problem with transportation this time. I understand he has asked about learning transfer skills so he may be back in physical therapy soon.

Hope you are enjoying the nicer weather as much as Jon is. There are daffodil and tulips shooting up in my front yard, the maple trees are budding and I'm especially looking forward to the red bed trees!

Another milestone passed!

2010-02-19T20:25:00.002-05:00

Jon had a visit from his wound doctor who pronounced Jon's bed sore healed and scar tissue is forming over it. What wonderful news! He (and we) have been looking forward to this news for months. When we first started learning about bed sores we were discouraged when we read that sometimes they can take well over a year to heal and yes, now that I think about it, that is how long it was for Jon. However, the turning point was when Jon started eating solid foods in May. While it never got as big as the scary examples I saw on the internet it had gone deep. Jon gives much of the credit to the care he got at Westerville and vows to be vigilant in following procedures to keep a new one from forming. We're quite relieved and wish him well.

Dancing and the Dentist

2010-02-17T23:48:00.006-05:00

Jon indeed had a terrific time at the dance Saturday night. There were a lot of friends from work as well as the group he hung around with. Also, his gal, Nancy. As I predicted he did get out on the dance floor and "showed off his form." Much to his credit there were no reports of running into or over other people's toes. Not too sure how often they have power chairs on their dance floor and with the darkness and all I was somewhat concerned. Anyway, a great time was had by all.

Jon took another trip to the dentist today for a second cleaning and impressions for his bridge. Dr. Bricker is retiring and the bridgework will be done under the supervision of a new gal, young and seems quite accomplished. His next appointment is on April 8th, his sister, Jo Marie's birthday. He remarked that she's been gone 30 years and would have been 46 years old this year. We've often wondered how life with Jo Marie would have been.......

Talked with Jon's dad about his cousin Mark's progress. He managed to go 4 years without getting a pressure sore but has evidently developed a doozy. It is at a stage 4 like Jon's and is now going through some of the infections Jon had but with much higher fevers. We wish him the best in a steady recovery--there is no "speedy" recovery for bedsores! Jon's sore has progressed to the point that it is barely visible. Great progress!

We're all looking forward to warmer weather--Jon is looking forward to getting outdoors and down the road again. We'll try to steer him down a different, much safer, road next time!

More progress

2010-02-12T13:28:00.005-05:00

Jon continues to do well. He knew some of the staff already; the director was in his class at school. Some of them are former students of mine so that gives him something to start conversations. He is having a good time teasing both staff and residents and they tease him right back.

We went to the dentist last week to start preliminary work on his missing front teeth. I had checked with my dentist last summer and he was willing to take Jon on. He has two nearly identical offices in two small towns about one half hour away. (He was the one who fixed my teeth when I had a head on collision back in the 80s and his work is holding up very well but I didn't realize he would be handing his practice over to a rather young lady.) Unfortunately, I set the appointment at the office with one slight difference--the x-ray machine couldn't reach him since the chair most patients sit in wasn't the swing away type the other office had. He will go back next week for another cleaning, x-rays and I think impressions for a permanent bridge. He is looking forward to getting them fixed as he's been quite self-conscious when he smiles.

Josh and I took a large bag of bird seed to fill the 2 bird feeders that Jon can see from his window. A few birds have come but mostly one particular squirrel has enjoyed it. One day it sat feasting on seeds for almost half an hour. How it gets up a rather smooth, skinny (1 1/2?) inch pole and up over to the shelf is beyond me but he makes it. I took a suet block for the end of the feeder and had to wade through a snow bank over a foot deep. If I had checked first I would have noticed that the feeder was empty, too. I'm curious to see if squirrels eat suet also!

Jon reported that the Center was making an appointment with an urologist. He has been having some concerns about the catheter and we were pleased to hear that something might be done to take care of them. We are pleased with the Center so far although I keep thinking he should be getting some type of therapy and they're back to doing only maintenance type exercises. Got a call from the rehabilitation doctor earlier this week and she was going to set us up with a rehab doctor in Toledo but haven't heard back from her yet--Columbus got quite a snowfall this week on top of the last snow. Barb had called on Tuesday to say that her car was stuck half in the drive and half in the street. She keeps hoping someone on the street will be interested in earning extra money but no one has shown up yet. Jon's dad just got his drive and walk plowed out today.

Valentine's Day is fast approaching and Jon is going to attend a dance at the Eagle's. Knowing Jon and how he loves to scoot around in his chair I wouldn't be surprised if he makes it out on the dance floor!

Hope everyone is enjoying (or surviiving) the snow....spring is coming, sooner or later!

Push It!

2010-01-28T22:05:00.003-05:00

My mom and I went to see Uncle J tonight, all in all a pretty good visit. He was giving us the rundown on all of the upper body and arm exercises he has been doing with weights and telling us how strong he was getting. He told me to stand up and he held his arm out, palm down and told me to push on his wrist. I wasn't sure what was up, so I was quite tentative at first and only applied light pressure to which he demanded, "HARDER!" I did and I'll tell you what, he had me- he resisted any pressure I applied! He is really building his strength in his arms and I told him I was pretty sure that if we had a table to arm wrestle on, he would smoke me! YAY!

....and More Independence!

2010-01-24T19:29:00.002-05:00

I went to see Jon yesterday and they informed me that Jon was "out." "Out ", I said, "Where did he go?" She showed me the sign out sheet and sure enough a friend of his signed him out earlier in the afternoon. I said, "Hunh, I wonder where they got a van."..the reply? "They took off on foot, said they were just going down the road." They were under the impression he went to my house which is kinda just down the road. We found out later that their original intent was to go to a friend's house who indeed did live "just down the road" but he wasn't home....don't know why Shawn didn't notice that when he walked by the house on the to Brookview but.... anyway they decided to go across town to see the landlady that he'd done a lot of walk for and then ended up across the street at his girl friend's house. I asked about a ramp and he said no problem...they just laid two 2 x 6 boards on the front steps and guided him right up, slick as a whistle...and that's his story and he's sticking by it!

I passed the two of them on my way into town and the grins on their faces spoke volumes. Jon was thrilled to be out and about and is looking forward to more trips. My concern is about the condition of the sidewalks, especially on High St. where in some cases there are none and the traffic tends to move quite quickly.

Pray, folks, pray!

Independence Ain't Just a Dam in Defiance

2010-01-17T19:24:00.004-05:00

So, I haven’t written a blog post in quite awhile. Even when I could go to Columbus and visit with Uncle J, I never felt compelled to write or share many of the happenings from my visits. Today though, Josh and I went to see Uncle J for a bit and Grandma was already there. He showed us the new room he will be moving to next week and I worked on his hands, giving him a mini manicure. There was a lot of grooming going on and his moustache was also trimmed for him. Then, it was time for a shave with the electric razor. The great part about that was that HE was the one using the electric razor!

I love these moments. He could’ve been doing this for a long time, I’m not sure, but this is the first time I have seen it. I have loved every time I see Jon accomplish a new task on his own. When he could feed himself with his utensils, learned how to use his hands to eat a sandwich or pick up chips, learned to maneuver himself to hit the TV buttons, and I absolutely love the way he can use his Camelbak to drink water himself. None of us could have predicted any of the events of the last 16 months any more than we can predict the next 16 months, but I can only hope that these instances of independence will continue to multiply!

P.S. I read an article in Forbes a few weeks ago that I found inspiring and I have pasted the link below. A-MAZE-ING!

http://www.forbes.com/forbes/2009/1214/breakthroughs-mit-herr-robotics-step-beyond-human.html

Angelique-I forgot to mention that I saw Jon leaning forward then pulling himself backward. That will make it even easier to position himself. The first time I saw Mark at the Village lean over to pull ouut a Kleenex I was amazed and Jon seems on the way to being able to move his upper torso more...
Grandma

Back in the Saddle Again

2010-01-15T17:11:00.002-05:00

Jon came back from the hospital shortly before noon today and reports that's good to be back in his chair again! He looked pretty rough all day Wednesday and must have been pretty cranky but he was asleep most of the time that I bopped in. He did remind me on Thursday to bring his gum he asked for since I didn't do it the day before but I had done as asked. Since he was asleep I didn't wake him up to tell him I put it right beside the sink so he ended up with 2 big packs of Juicy Fruit.

The nurse at Brookview commented that if she had her way he wouldn't be in his chair so much...much the same that the Village had said. However, Jon balks at the idea and so we need to cross our fingers that his bedsore that is healing so nicely does not take an unexpected turn for the worse again.

He reports that his weight is down to 168 - that's a loss of 4 pounds for which I'm glad. He's carrying some of that along his jaws and his tummy when where he really needs it is on his bottom end.

Look forward to seeing some of you on one of my visits with Jon.

Getting to know Defiance Regional Hospital

2010-01-13T08:11:00.004-05:00

Was awakened this morning on Brookview's third attempt at getting a message to me. They called on the land phone, (6 feet from my head)- then my cell phone (1 foot away) where they left a message and then again on the land phone which Greg answered. He finally got me awake with the second hit on the arm. Jon has been coughing the last few days and last night added a fever of 102. Oxygen level down in the 80s again so they sent him to the hospital just down the road. By the time I got there they had just admitted him. Blood had been drawn and chest x-rays taken. Found he has an itchy reaction to levaquin, an antibiotic, which was being given in addition to rocephin. Both medications are new to me although Barb seemed to think she recognized levaquin. They had an order in for a new medication when I was there at 5:45. Bless their hearts-they were going to call and give me an update around 8:30 a.m.

Went back around 2 this afternoon and his chest x-ray came back negative, his urinalysis showed a urinary tract infection and his sputum culture won't be read until sometime tomorrow. He already had a special bed and he was trying to nap. His fever still is in the 100-101 range. Stopped at Brookview to pick up his Camelbak water bag since his cleaning supplies arrived in the mail today. It has never been thoroughly cleaned since we got it. We were under the impression that that would probably be okay for the bag as long as it was constantly being filled with fresh water but the hose is getting a little yucky looking.

We are finally getting balmy weather--surpassed the predicted high of 30 by 2 degrees! Hope you're enjoying your winter so far. Thanks for looking in....

Signs of Independence

2010-01-10T20:31:00.002-05:00

Yesterday I talked with Jon today and it seems he's had a bit of a medical emergency. He had an urinary tract blockage which can lead to a condition called autonomic dysreflexia which fequently happens to persons wiith spinal cord injuries. Since his injury is aboe the thoracic vertebrae he has no way of feeling pain and the body reacts in a different way to those signals. He noticed that he had very little urine output and asked that his catheter be changed. He had been questioning the Village about changing it since it is routinely done once a month. Somehow it was not changed before he left. Saturday a new catheter was put in. Sunday he noticed the urine flow was slow and it contained signs of blood (another indicator that things weren't working well) So another catheter was inserted. He also asked that his oxygen level be checked. Good thinking on his part, it was down to 85. Since respiratory therapists like to keep it above 90 he asked to be put on oxygen for a while and they put him back to bed for a couple of hours. They removed the oxygen when his level went to 95.

He has had several bouts with autonomic dysreflexia but I think this is the first time he had to handle it on his own and I'm proud of how well he thought things out. Barb said that she reminded him that that was one of the things he would have to take responsibility for since not all places have had much experience with quads. He went through the whole process with her of what to look for and what to do so that was a good reminder. Anyone wanting to know more about this condition can refer to: http://www.apparelyzed.com/autonomic.html for a quick overview.

I noticed when I was talking to him that he sounded hoarse and out of breath. He said he had been doing a lot of coughing and was congested. Today when I visited I took his little blue "pickle" which he blows into andmakes a rattling sound. Those vibrations travel to his chest and help break up his congestion. He hasn't used it since his last bout with pneumonia months ago. He blew into it at least 4 times today and said his coughing was a more productive.

His hands were really bothering him today. He had at least three sets of people work on them before I got there and he let me rub in some Aspercreme and then massage them. That seemed to help.

He also commented that he wasn't getting all his meds and wanted me to look at his medication list. Shortly afterwards his LPN came in and reported that their pharmacy wasn't sending all his meds--they didn't have them on hand and evidently they were slow to arrive when ordered. Since this wasn't a new problem they have changed pharmacies and were promised to have all his meds delievered by tonight. Certainly hope so.

Thanks for checking in.....

First week at a new home -- amended

2010-01-08T08:50:00.004-05:00

Jon has been back in Defiance at Brookview on Harding Street for a week now. I stopped by today to take a picture of the view he has and found him sitting by the window enjoying it. I am happy to report that he is being seen daily by both physical and occupational therapy. He was looking forward to getting back on the mat and doing more with his legs and torso. O.T. is working on his hands again. He likes his new room. He has in essence a private room so there is plenty of room for his power chair and the hoyer can maneuver better without another bed in the way. Allows more space for company, too, which he seems to be getting almost daily. Having just family visiting was getting to be a drag, I fear. Greg didn't get down as often as the girls and I so he spends a good deal of time there and usually brings a friend along. He has been enjoying the company so keep it up guys!

The food is more to his liking. Looks more like home cooking and not rolled, pressed and thinly sliced! Think Greg took him some homemade meatloaf the other day, too. Jon reports that he is the youngest person at the facility and I think the population is mostly older women but that doesn't seem to bother him. A lot of the staff is younger and seem to know someone in the family and that gives him things to talk about. He and the Director went to school together and the Admission Director's mother and I worked together on Crisis Line in days gone by.

While visiting tonight I noticed that the wound vac was lying on the floor and he commented that the staff was so pleased with how his bedsore looked that he didn't need it anymore. It has very little depth and is looking good. Absolutely, positively what we have all been waiting for!

The weather here this week has been snowy as I guess it has for most of you. Hope you are making the best of it.

Happy New Year--he's back in Defiance!!!!

2009-12-31T21:26:00.002-05:00

After an exhausting 36 hours Jon arrived at Brookview at 5:10 this afternoon. We started with a call yesterday around 11:30 saying he would be leaving this morning at 10. I called Carol and we got on the road around 1:30 with the intention of helping Barb pack up and load the car. When we got there Jon informed us he couldn't leave in the morning because the wheelchair couldn't leave the facility and while the company was debating that they said that nobody had paid any rent on it in months...as in at least 6 months and why did Jon still have it? But then they didn't even realize that he still had it until they were told he was leaving the Village. Then they said he could go if Jon bought the chair--$3500, but its worth at least $17000... So then the trip is on again and I think canceled one more time. At around 1 when we were eating lunch at Barb's they called and said he was leaving at 2. I hurried over to meet the gal from the wheelchair company, wrote a check for $2500--they reduced the price after umpteen calls to get things straightened out. (The chair can be serviced by the Toledo branch) and Barb and Jon were on their way by 2:30 or so. Carol and I were left behind to finish packing--managed to leave things behind on the tray table because Jon was so insistant that it not be touched when Carol was packing last night and I never thought about checking it out. Carol and I left about 20 minutes after Barb and Jon but we managed to catch up with them about 1/2 hour before reaching home. Got him settled, fed and left him to get acquainted with his new digs. His new address is:
Jon Castanien, Rm 222
Brookview Healthcare Center,
214 Harding St.
Defiance, Oh 43512

I can only imagine the rush he had when we crossed into Defiance County--he has been waiting so long for this trip! He is aleady beginning to feel like he's ready for more independence and is looking forward to resuming old friendships. The center has no set visiting hours but he generally is in bed by 10 and if it is like most places we've been they expect quiet visitors after 9 p.m.

Hope you have a great New Year!

2009-12-30T22:04:00.002-05:00

Jon right before we went to the Zoo to see the lights.

The Roller Coaster Continues

2009-12-30T20:05:00.004-05:00

First to finish off the time with the van. Jon and I thoroughly enjoyed having a van. On Saturday we went to the Iron Pony (a motorcycle shop he has been wanting to go to) and did make it to the Columbus Zoo for the lights. We went into the buildings before it got dark and after to get warm. He enjoyed it. Sunday he did go back to church with me. He said he had never been to a church like that before. I said is that good or bad? He said good. After church we went back to Iron Pony and then off to develop more film. We got back at 5:00. I dropped him off at the door and said I was going to return the van. I was on the on ramp when I realized my car keys were in his room. I went back to get them. I was just getting back on the freeway when it started to snow!!! God is so good. Jon was safe and sound before it started to snow.

Monday he gave me "permission" to sleep in Monday morning and that I didn't need to come in until late afternoon/early evening. He counts on me helping to put him to bed. At 5:00 p.m. I received a phone call from the receptionist. Jon wanted to know when I was coming in. I told her I would be there after 6:00. I got there at 6:25. Tuesday was so cold down here that after I took out the trash in the morning I didn't go anywhere the rest of the day. I didn't even go back out to bring the trash can and recycling bins back in.

Today at 11:41 Mom and I received the phone call about Jon coming home tomorrow. I got there at 2:03 after running errands. Mom and Carol arrived 4:45. Here comes the roller coaster ride. Around 3:00 the social worker comes in and says that she has to cancel him going home tomorrow. We just looked at her and she said "I'm serious". The corporate office of the wheelchair company said that Jon could not take the chair. Apparently the original sales rep had not filed some paperwork that he should have, that there had been no rent payments for the last 8 months. Then they called back and said that if the new facility would pay rent of $200-400 then Jon could take the chair. Then they called back and said no to renting it that if the facility wanted to buy it for $3500 that he could take it. The facility obviously didn't want to do that. We asked if Jon could purchase it for that amount. Around 4:15, I left to get my phone cord to recharge my phone, while I was gone the new facility called back saying that corporate had called them and said that there would be no rent, or purchasing necessary that Jon could continue to use the chair as previously agreed. So when I got back at 5:42, he was going home. I went to the bank and to pick up some dinner with Mom and when we got back at 6:15, we found out that the sales rep called the current facility and said no one from corporate had told him that so we are back off again. So as of 8:20 p.m. Jon is not leaving at 10:00 tomorrow. The sales rep is getting in tomorrow at 7:30 and will find out what is going on and will let us know in the morning what the final decision is. We are all physically and emotionally tired. Carol packed up his room while Mom and I were out at the bank and getting dinner. I loaded the boxes containing things that he does not use daily in my car. I'm pretty sure that he will be going home in the next day or two. If not I will be taking his stuff back in.

More to follow as it comes to us. Please pray that things go well tomorrow and that every one's emotions are better.

Coming to Defiance Soon-Like in 24 hours!

2009-12-30T12:47:00.003-05:00

The Village at Westerville called just a bit ago to tell me that Jon would be leaving at 10 a.m. tomorrow morning (Thursday 31st) Carol and I are heading down this afternoon to help Barb pack and load up and we'll all be back in Defiance Thursday afternoon. What a way for Jon to usher in the new year--he's been looking forward to this day for months now!

Got to run...

Best Christmas gift!!

2009-12-25T23:59:00.004-05:00

Over the weekend the decision was made not to come to Columbus for Christmas but to have it at Angelique's. Dad was staying in Columbus and Greg was going to come down after our celebration to spend the rest of Christmas with Jon. It was a hard decision to make. My emotions have been all over with all the changes going on lately. I prayed that Christmas is God's Sons' birthday and wherever He wanted Jon to spend Christmas so be it. I had a list of places I wanted to take Jon if we only had a van. The very next day after praying and giving it over, I received a phone call from the van rental company that they had a van for us if we still wanted it. I immediately called Mom to see if she could get the "reception hall" in her church to have Christmas. Angelique lives in the 2nd story of a house and so therefore that no longer worked. Within a half hour, Mom called back and said we could have the church from 12-6. Jon is still taking the IV and it doesn't normally end until 11 so that worked out fine. Jon and I asked if they could start the IV at 8 instead of 9 thereby leaving closer to 10:30. It takes about 15 minutes to get him strapped in and ready to go. I had called at 7:50 a.m. to remind them to start it at 8:00 and I was told it was started already. I got there at 9:40 hoping that it was almost done. It wasn't. Jon said they did not actually start it until 8:05. However, we were still loaded and actually left at 10:30!! Getting the van and taking Jon to my church for Christmas Eve service, taking him shopping and to Defiance for Christmas was my Christmas gift. We also plan on going to the Columbus Zoo for the Christams lights on Saturday and he wants to go back to my church on Sunday!!!! I told him we would have to go get a steak dinner. We haven't planned that yet. We have the van until Sunday night so we are going to use it!!!!!!

Christmas was very nice. Everyone liked having it at the church. It gave Jon room to ride around, they have a very nice and large kitchen, we ate together without being cramped and he had friends stop by to see him. Jon did not want me to publish in the post that he would be in Defiance until after the fact just because we didn't know how many people would try to come and we had to leave between 6 & 7 to get him back in time for the 9:00 IV (he could start at 10 and still be ok). His last day on the IV will be December 30th. Then the transfer papers can be submitted. We hope to have him home for good around the new year so he wanted to wait until he was home to have everyone stop in. As it was we got back at 9:25 and it was 10:20ish before his aide came in to help get him to bed. He was supposed to get his shower tonight but she didn't have time to do it all before her shift ended at 11:00. By the time she got in there I already had Jon out of his chair and into bed and was starting to get him undressed. The timing was good because it really takes two to get him undressed. His shirt and jacket we take off in the chair but the rest gets done while laying down in bed. When I left the room at 10:45, the IV had not been started yet.

When I got home and unloaded my stuff from the van I realized that I still have his eating tray in the van. Charlie (my dog) had been in the house for over 12 hours without being let out. After he came back in I was just too tired. If they give him a shower in the morning before breakfast then I should be able to get it back in time. If they don't give him a shower, then he won't have a tray to eat on. He eats at 7:00 am.

Hope everyone's Christmas was as blessed as ours. Merry Christmas to all!!!!!!

Barb

Roadblock Ahead

2009-12-18T07:28:00.001-05:00

When the good Lord wants to put a halt to things some of us have to be hit over the head! Troubles began for Jon when he tried to transfer to another facility. It seems that the medication that he is on is not covered by Medicaid and is quite expensive, to boot. Our first choice of placement won't take him as long as he is on that medication. The social worker is looking into 2 other choices, one here in Defiance and another in Wauseon which is about forty minutes away from Defiance. When the director of the first facility told me they wouldn't take Jon ishe just said it was because of the IV. I didn't translate that as the medication being the problem but thought it was just the process of having people on IVs. Now that I know it is the medication I rather doubt that the other two places will take him since the medicine is not only not covered by Medicaid but is also quite expensive.

Jon's solution to the problem is "Fine, I will just switch back to the pills!" I can only imagine the amount of badgering he gave the wound doctor. I have on occasion said "have it your way" although lately my solution is to just walk out of the room. This doctor, however, finally gave in and said okay when he leaves he can be switched to the pills. The other two doctors who have, I gather, top priority have said absolutely no way, no how, is he going to switch back to the pills.

Jon's response was okay I'll just sign myself out of here--who knows where he thought he'd go....After some heated discussion with the social worker, bless her heart, he was convinced that leaving against doctors advice might possibly cut him off of any further coverage by Medicaid. He has reluctantly agreed to stay put and she is continuing to check out other facilities. You know how disappointed he is when he says that there is no point in our coming down for Christmas if he can't be at home. Meanwhile, I have dibs on a 2 hour stay in the activity room on Christmas day which I will know more about later today. On the way home I was even running through people we know who might not be using their van.

Yesterday was Greg's birthday and Carol and I came home from Columbus in time to pick up a cake and some Kentucky fried chicken for his birthday supper. (This is after dealing with Jon) Sat down to enjoy the meal and discovered they had not packed up several of the items I thought we needed so went back to get them. It was late by now-eightish and people were hungry enough that when I came back they had finished eating and seemed quite full, thank you! After cake and cards everyone but Angelique left and we settled down to a game of Scrabble. When it was over--she clobbered me--she went to the bathroom and noticed a dripping noise. We checked and nothing seemed to be dripping anywhere but now it sounded like water was running. We checked in the closet behind the bathroom and tried to turn off the water but to no avail. I made a frantic call to a friend in the plumbing business. After checking to make sure I had turned the water off correctly he noticed that the meter wasn't running and announced we had a broken pipe somewhere between the side of the house and the meter. Another call to the water department who of course had to know the correct spelling of our name and could we spell it slower, and then the address, we had to wait for a call from the person who would actually come and turn the water off at the street. My friend stuck around until the fellow came and helped him stab in the dark along the street until he finally hit the shut off valve. All in all, I think I have about an hour's worth of gushing water in my crawl space and soaking into the walls of the bathroom and 2 closets and probably the flooring and insulation. Sooooo, no I won't be having Jon come home to Defiance for Christmas--I might not even be home for Christmas. (And I didn't have to be hit in the head that hard, Lord.)

To top if off the lady from Toledo who is supposed to check out the house is scheduled to come around 11, stuff from the closet is everywhere, I have a therapy appointment at 9.

It is now after 8, I can call the plumber and my insurance agent and get things rolling. Hope your Christmas plans are going a lot smoother and mine. We'll probably take Angelique up on her offer and spend part of the day at her apartment if we can't get the 2 hours at the retirement center.

Again, You have a good holiday and we'll keep you posted on things--

P.S. Jon's Dad fell last week-end and had 2 collapsed vertebrae. He was operated on Monday and had them filled with a special hardening agent and is recuperating at Barb's. He seemed much better yesterday and ought to feel up to being back at his apartment some time next week, if not before.

Jon will be in Defiance to stay by Christmas!!!!!!!!!!!

2009-12-09T22:58:00.002-05:00

Mom, Jon and I met with Medicaid Waiver Program today at 1:00. We talked to them for 2 hours and 40 minutes!!! The bed and hoyer will be paid through regular Medicaid but need to be ordered by a PT or OT. That will need to be ordered through the current ODJFS case manager. All requests will need to go through the case manager. The assessor for the waiver will submit his paperwork on Monday. It could take as little as 4 weeks or as long as 3 months to get approved. The approval letter will be sent to whatever Jons address is in Medicaids system. So it will follow him to Defiance. The safety assesor still needs to come out from Toledo to do his part. Once the waiver is approved, they will assign a case manager out of Toledo.

We are still going to move Jon to Defiance, it just won't be to Moms. Since his wound is not healed yet (Jon said that it had not changed in 2 weeks but this week it has started to fill back in again) and the infection is in the bone Medicaid said he will need to be in a facility. As soon as the assessor left, I asked Jon "So when do you want to go to Defiance?" He said "Tomorrow". (I knew the answer I just wanted to hear him say it).I asked "Even if it means going to another facility instead of Moms'?" He said "Yes, at least I will around more family and my friends." This will allow Medicaid time to get things approved and time for us to get the addition done or at least the walls up. It obviously won't be tomorrow (today as most of you read this) but it will at least be before Christmas. Mom walked over to the Social Workers office and gave her the name of the place in Defiance and she is starting the process.

The Medicaid waiver program will pay for the modification of Jon's current bedroom into a bathroom but it needs to go through the whole bureaucratic system. We can not start getting approval for that until we have the initial approval described above. The assessor said to plan on waiting 3 months for anything Medicaid needs to approve. They also will need to post the bathroom improvements on a bid website. All contractors need to have a medicaid provider number. We can request a certain contractor, however they will still need to post it for bids. There's no guarantee that Dean & Jon's friends can do the bathroom. He confirmed that Medicaid will not pay for an addition so that can still be done by Dean & Jon's friends.

We are all so pumped. Thank you to everyone that prayed for Jon to be home by Christmas.

Gotta go. This is the 6th night in a row that I have gotten to bed at 11:30. Charlie, my dog, has also been getting up alot at night so I am getting even less sleep. His digestive system is messed up. I am hoping to get a full nights sleep tonight, we'll see.

God bless you all.

Barb

We have a Medicaid meeting!!!

2009-12-08T21:34:00.004-05:00

Tomorrow (Wednesday) at 1:00 pm Mom, Jon and the Columbus Medicare meet to discuss what Jon will need. As long as Jon is on the wound vac he will need to be in a facility. One of the questions Mom will ask is whether we can transfer Jon to a facility in Defiance. Now that he has been assigned a case worker out of Toledo, he will keep the case worker and we should not have to go through all this waiting again. So once his wound is healed and the addition is done, he should be able to come home without having to go through all this redtape. In the meantime, I am really trying and praying that we can get him in Defiance and he can have Christmas with us at Moms. I have talked to Jon's friends about the ramp and the goal is to have it up in time for Christmas.

Mom has not heard from the Toledo office yet to come out to the house.

Thursday the Village is having a Christmas party for the residents and their families. I arranged it so I don't have to work that night and can be with Jon. I don't know if Dad will come or not yet.

Please pray that Jon will be able to be transferred to Defiance before Christmas.

Barb

There is light at the end of the tunnel!!!!!

2009-12-05T12:04:00.003-05:00

At last we hear from Medicaid!!!!! The Toledo office will be contacting Mom in the next 2 weeks (from Thursday 12/3/09) to set up a time to come out and look at the house to let her know for sure what improvements need to be made. The Columbus office will be coming out in the next 2 weeks to assess Jon's condition in order to decide what services/needs he will have once home. So there is finally a light shining at the end of the tunnel!!!!!!! It is pushing it really close to say that Jon will be home by Christmas to stay. If the rental van comes through Dad has agreed to drive Jon up to Mom's for the day. He can't spend the night until we have a hoyer or some way of getting Jon in and out of bed. I have not seen Jon since we received the news. I will be going over this evening.

Jon met with the Rehab Doctor. She wasn't sure why they were meeting with her. It was a very frustrating visit for Mom and Jon. The Rehab Doctor doesn't see a need for Jon to come to Dodd but says he needs to have a pyschological test (nothing out of the ordinary, typical for situation). We are assuming he will go to Dodd for the test unless it is something that Village of Westerville can administer.

Jon is finally starting the IV drip for the wound infection. He was given a choice between the drip and pills and he chose the pills as he did not want to be tied down to a drip. He likes his freedom and he isn't able to drive around when on the drip. The IV drip is more effective and the pills are not working as they would like so like it or not he is on the drip.

We have been looking at a van to purchase. It is a 1987 Chevy van that has around 75000 miles on it for $2,500. Dad and Mom are saying no, Jon and I are saying we would like something for at least a year until we can get something newer. We don't know how owning a $14,000 - 29,000 van affects Jon's Medicaid. That is the range we have found on the internet for current handicapped accessible vans. It costs roughly $50,000 to convert a typical van to a handicapped accessible van. Medicaid will pay for the conversion only if you currently own a van. They will not pay for a van just the conversion. To me it is cheaper to buy one that is already converted but we are dealing with bureaucracy.

That is all for now. I will write more after talking with Jon. I will see if he wants to write a post.

Please pray that we can bring Jon home before Christmas to stay!!!!

Barb

Apologies

2009-11-29T18:17:00.002-05:00

I am very sorry that it has been so long since I have written a post. I have been busy with my second job and haven't been getting to spend much time with Jon. I have been going over between 9:45 - 10:00pm. Sometimes he is awake and other times he is sleeping. One of my jobs is to pick out his clothes for the next day. I hold up the clean clothes, he tells me which he wants to wear the next day and then I put them out and put the others away. Sometimes thats all I do, if he is sleepy.

He is very anxious to get home. We were all hoping he would be home for Thanksgiving and that didn't happen. I was supposed to order a van for Thanksgiving and didn't get it ordered in time. I was in the middle of getting new insurance as I have a new (to me) vehicle! A family from church gave me a 1998 Century. It is nice not to have to worry about whether I will make it from point A to point B without breaking down. While the new insurance was being approved, the old insurance was liability only and I could not rent a van with liability only. When my insurance got straightened out, all the vans were rented. Jon was disappointed. He told Mom and the rest of us to go ahead and go to Toledo to the Slawson side for Thanksgiving, that he would be okay here. Dad spent all day with him so I felt better about not being with him. It ended up being a good day for all of us.

His throat is healing well from the trach being taken out. The hole in his belly is healing nicely from the feeding tube. The bed sore is starting to get smaller again. Each Wednesday Jon hopes that the wound vac will be taken off and each week they keep it on. Since they took it off before it was fully healed last time, I think they want to make sure it is healed before taking it off this time.

We are just waiting for Medicaid to approve a waiver we applied for clear back in July!!!!! The social worker keeps checking with Medicaid but we don't have an answer as to why it is taking so long. One of the problems I'm sure is that he is currently residing in Columbus so Franklin County is processing the paperwork but Mom resides in Defiance and that is where Jon will be. Part of the waiver includes money to help with making modifications to the current home (will not pay for an addition but will pay for equipment needed and putting in a bathroom in the current bedroom). The house will be inspected out of the Toledo office of Medicaid so the Columbus office needs to coordinate with the Toledo office to get everything done. We don't know if this is part of the holdup or what. We are all getting frustrated but especially Jon. He just wants to get home. He hasn't been getting any kind of therapy for quite a while now and so there's no medical reason or therapy reason to keep him in Columbus anymore. We are trying to get him to agree to go to Dodd hall before he leaves for Defiance but he just wants to get home so we are having a problem convincing him to go. The goal for all of us is to have him home in Defiance for Christmas. It can't be soon enough for Jon. He has an appointment with the Rehab Doctor at Dodd Hall on Wednesday. She will be his permanent Rehab Doctor, even when he goes home. We are hoping she can get things moving (not sure how though).

Dodd Hall not only offers therapy but training for the family, counseling, water therapy, electro therapy (don't remember the actual name) and driving school to see if he has the necessary skills to drive with adaptive equipment.

I am late getting over to see Jon. I have been having problems with the computer both at home and at Jon's. At Jon's the center does not have a registered security certificate and so my computer doesn't like to use the internet there. I have to change some settings and it hasn't been working right.

Jon says hi to everyone and hopes your Thanksgiving was good.

Please pray that Medicaid approves the waiver soon and that we can get Jon to Defiance before Christmas.

Blessings,

Barb

Bed Sore gets bigger

2009-11-07T23:27:00.003-05:00

Jon finished with the antibiotic for the MRSA. They have scheduled an MRI to check the wound again as it is now getting wider as well as deeper. The MRI is scheduled for Thursday the 12th. He has been going to bed in between meals. The aides aren't very happy with all the extra getting up and laying down but there's not much that can be done. The Dr doesn't want him on the bedsore for very long so it limits the time in the chair. They still don't want him eating in bed even though he has a different bed. So Jon and the aides just have to adjust.

Jon has gained 5 lbs in one week and 8 pounds in 2 weeks. Mom is concerned about the weight gain and was wondering if Diabetes was a possibility (what she didn't know is that Jon has been eating a lot of candy since Halloween and has been supplementing his meals with what I bring in for my meals). Dad has diabetes and Mom is borderline so it is a legitimate concern. His blood test was 115 for 2 mornings in a row. The acceptable range is 80-120.

Jon is getting anxious for work to start on the house. Cousin Dean is working on a floor plan putting an addition on the back of the house. Some of Jon's contractor friends came over on Friday and is suggesting a 12 foot extension off the back. They are anxious to get started on the footer before the ground freezes. They will be donating some supplies but need to know what supplies are needed.

Mom looked at a van that is supposed to be wheelchair friendly. However, it is geared for someone in a manual wheelchair and not one that is as tall as Jon's electric chair. So the search goes on for a handicapped accessible van.

Mom & Carol came down Tuesday through Thursday. Mom will be back Tuesday for her 4 week check up on her wrist. Angelique came down and visited Jon on Sunday for a few hours. They had a nice visit. Angelique, Jon and I took a walk over to Kohl's and did some window shopping.

Well it's late and I'm going to turn in. Maybe I can take the computer Sunday and have Jon write a posting. I apologize for not posting in so long.

Many blessings,

Barb

One year since accident!

2009-10-24T14:47:00.009-04:00

Last night we found out that the wound itself is infected, with MRSA again. He started taking Bactrium DS, a pill, twice a day for 7 days. The x-ray was primarily taken to find out if there was an infection in the bone (which could only occur if the wound had made it's way back to the bone). Luckily there is no infection in the bone therefore we are assuming that the wound is not at the bone. The hole is too small to look down. Greg came last night and a friend, Paul, came to visit today.

"Hello everybody this is Jon. It has been one year since my accident. I have good news. It feels great to have my trach out. It does not bother me to swallow food anymore or when I move my neck around because the big lump in my throat is gone. The hole in my throat is almost healed. But it will be a little bit longer before it is fully healed. They keep it taped shut and change the dressing daily. The opening for my feeding tube is almost completely healed. It looks like I have two belly buttons now : ( In other words I have two innies!! Which makes me very unique. They are saying that any day now I can have my home evaluation (this will determine the amount of waiver he is eligible for. This is what we have been waiting for all these months.) After that I will go to Dodd for 3 weeks and then I will go home. So soon I will go home to everybody. Have to go. Love to everyone. Bye."

My title originally read "One step back, One step forward". I was looking at Jon's wound as being a step back. He is focusing on the fact that he is getting to go home soon. It reminded me that he has come soooo far since the accident that the wound is small compared to all the progress he has made. There will always be obstacles but it does not have to become a set back. He is not seeing the wound as a set back.

Good News, Bad News, More Bad News

2009-10-21T22:16:00.005-04:00

Jon called me tonight and asked if I was coming over, I told him I was on my way. He said he had good news and bad news.

Good news: When I got there, he told me about his trip to the ENT (Ear, Nose, Throat Dr.) yesterday (Tuesday). His trach was totally taken out!!! He said it went very well, no hitches. He said he is able to swallow much better and can bend his neck without the trach getting in the way. When he took a drink, he was supposed to tip his head down so the fluid would not go down the wrong pipe. Those instructions have been removed.

Bad news: He has major wax build up in both ears. The last visit to the ENT (when they put a size 4 trach in) the Dr. had requested that they flush Jon's ear with a peroxide flush to soften the ear wax. The nursing facility apparently never got those instructions and his ears had not been flushed. The ENT cleaned the left ear and it was easier to get out. The right ear was too hard yet. They have given new instructions to flush the ear again. Jon has a follow up appointment with him in 2 weeks again. He is now able to hear out of his left ear. Jon has been complaining about that being his bad ear and that he has not been able to hear out of it very well. Now his "good" ear has become the "bad" ear.

Bad news: We knew that the wound was getting deeper. It has been confirmed for Jon. It is not getting bigger, but deeper. The wound doctor doesn't know how deep it is yet. They will do an x-ray on Thursday morning to find out just how deep it is(The Dr wants to see if it is back to the bone or not). Unfortunately, this particular spot will be susceptible to bed sores as the muscle is already gone and they have not put a skin flap over it yet so it is very tender. As a result of it going deeper, the Dr. has ordered a couple of things: 1) in order to take pressure totally off the bottom, Jon will be put to bed 3-4 times during the day. He will get up in the morning and eat breakfast, then go to bed for about an hour where he will be put on his side. Then he will get up again, sit in his chair for about 2 hours which will be over lunch time, go back to bed and get up for supper. Then he will go back to bed for the night. They said the Dr. wanted him to get him up again one more time but that would be within an hour of his normal bed time so he will just stay in bed for the night. 2) The wound vac is back. 3) The Dr. has ordered the bed that has the silicone beads in it. I have mixed feelings on this. I still say that it can't do it's job with a wound vac on. The last one wasn't working right as the beads weren't bouncing much anymore. If you aren't going to let it work right then why get it. They feel that it is a preventive but what we need right now is a treatment. But it's not up to me.

I think I have remembered everything.

An update on Mom. Her sister, Susan, picked her up on Tuesday and took her to their mother's house in Michigan. Mom is trying hard now to overdue it but not using either elbow or the left wrist is not easy and she is overdoing it. She ran out of the pain pills last Thursday (the Er only gave her a script for 12 pills) and did not get a new prescripion until Monday so her weekend was pretty painful.

Thanks for checking in.

Back on the Home Front

2009-10-16T15:50:00.003-04:00

I was hoping Barb had some time to post this week but she's had her church responsibilities and brought me half way to Defiance Wednesday which didn't give her enough time to really visit with Jon afterwards. Before I left for Defiance I checked and found that they had no record of Jon's return visit to the ENT doctor on Tuesday. The doctor will hopefully remove the trach for good and clean his right ear. Jon now has transportation arranged. I also requested that they not take out the PICC line for IV's but again they are really afraid of infection which realistically shouldn't happen with proper care...Jon's veins are rather "tough" and I think it's hard on them to keep putting lines in and out. I would feel a lot better if he didn't keep getting infections or pneumonia every month or so.

I am trying my best to abide by doctor's orders but you can imagine how hard it is to weigh every thing in terms of "lighter than a coffee mug." The right arm has no cast , or sling, so it is getting a little more use than it should. I should also add that in addition to the fracture in one of the bones in my left wrist (which is in a cast) my left elbow also has a hairline fracture as does the right elbow. And the bruise on the left elbow is far darker than the right.

The fellas are learning how to cook. I walked Greg through the process of making breaded pork chops last night and Josh just finished making a meatloaf.

Must go--wrist aches from hunt and peck typing! Thanks for checking in.

The Good, the Bad and the Ugly

2009-10-12T21:20:00.004-04:00

In spite of Barb's effort to take measurements and compare them with the height of the van, the angle of the chair and Jon's head did not clear the door upon entry. It required leaning the chairseat back so far that we had to push it in manually--all 450+ pounds. Then he had problems getting it centered so that it could be tied down properly. We finally got things fairly well situated and were off...and rather convinced that this was not the kind of vehicle we'd be looking to buy.
The day went very well. Everyone was delighted that Jon made it and was doing so well. People were in and out of the cabin all day giving them a chance to visit. He and his cousin Mark, also wheelchair bound, had a chance for long talks about adjustments and home modifications. We left about 7:30 with Angelique riding with us and Greg following so he could take her back to the campfire which they all enjoy so much. I sent them back about half way home and found someone to help me get the wheelchair unfastened. A worker got one side and showed me how to do it and I started to go around the van to do the same on my side. There was just one flaw...I forgot I was on the ramp and tripped. Jon described my fall as looking like I was diving into water with my hands straight out. I did a quick check and while I was sore everything seemed to work; fingers, arm, no bump on the head... just a broken fingernail that I had heard crack taking a good chunk of my fingertip with it. (I had been worried that it had been a bone snapping.) I got him all settled and unpacked the van and headed for home. I took an extra duty Tylenol and waited for it to work. Two hours later I headed for the emergency room. Six hours later, and at least 9 x-rays, I left with the finding of two severely sprained elbows and a possible fracture of the scaphoid bone at the base of the wrist on the thumb side which necessitated a splint. Later I had a call that the x-ray of the right elbow showed a fracture also. Tomorrow I get a cast on the left wrist and my guess is another on my right arm.
Today Jon had great news for us when we arrived saying that the feeding tube had been removed--one more goal met and another step closer to being discharged! ...and that it was his last day of physical and occupational therapy. I had a little chat with the head of therapy and that may not be the case. We think everything is a go for the power chair which he won't get until the week of discharge, whenever that may be.

Correction

2009-10-07T09:24:00.003-04:00

Somehow there's an advantage to delaying a post. I got the distinct impression when I heard that Friday was the last day with the occupational therapist it was because she was leaving. I can't even imagine hearing the words "last day" without asking if she was leaving but somehow I misunderstood. She's still at the Village and supposedly Friday was to be her last day with HIM however, she fitted him with some sort of brace Monday to stretch his thumb on his left hand.

....and still more developments

2009-10-03T08:28:00.002-04:00

The speech therapist moves fast! Thursday morning Jon headed over to St. Anne's for a full blown swallowing test. Food is "tainted" with barium and a machine tracks it as he swallows. Jon said it went well but I haven't heard the official results yet.

Thursday afternoon Jon and I talked about the whole physical therapy bit and how he needed something more detailed than the arm swinging he does during the pressure relief minute or two every half hour. So we decided that on days when no therapy is scheduled we would devote that same half hour every day to our own program. We're including more head movement since he still is relying mostly on looking at you out of the corner of his eye instead of moving his head and looking head on. Also including shoulder shrugs and arm movements. So when when his occupational therapist announced that she was leaving also Jon told her I was already starting to do therapy with him.

Yesterday I managed to get some time to cut his hair--Thursday I soaked his hands so I could trim his nails. Last night the nurse told us that the throat culture that had been taken earlier in the week showed that the type of pneumonia he has was resistant to both zosyn and cipro which is what he's been on for the last week. Another medication will be started today, my memory fails me at this time as to what it will be.

Arrangements are coming along for him to attend the family reunion next Saturday. Barb's located a van rental agency that has vans that are equipped for wheelchairs and we have tentative approval from the doctor. Jon's really looking forward to the trip and it will be a good trial for the long trip home since this is a two hour trip one way. Thank goodness his chair tilts way back and he could get a nap in either direction,

Thanks for checking in. I won't be back until Tuesday when I bring Carol.

Getting Closer to One Goal

2009-09-30T22:51:00.003-04:00

Earlier this month the PT had set 4 goals for Jon before he went home...getting rid of the feeding tube, off the trach, the wound vac and oxygen. He is not using the feeding tube for anything, including medications but he has to be stable for 6 weeks afterwards before they will remove it. He is off the wound vac which leaves the trach and oxygen.

We finally made it to an Eye, Nose, Throat doctor to map a plan to get rid of Jon's trach. He agreed it was past time to downgrade the size of the trach and replaced it with a size 4 Shilley. While we were there he also checked Jon's ears and said he had a lot of wax in both ears and started to clean out the left one. It was rather like watching a dentist at work. He had a long, skinny instrument that he used to pull out pieces of wax, wipe them on his cloth and then go in for more. Jon would wince a couple of times and then let out a loud ow! He had pulled out a piece the size of your little fingernail which looked like dried tar. He didn't do the left ear which he said was even worse but would do it on the next visit when he would probably removed the trach. He suggested putting a couple drops of hydrogen peroxide in the ears periodically and let it bubble to loosen dried wax and let plenty of soapy water get in them while showering. Even though I told him of the numerous time Jon has had aspirational pneumonia he didn't think a swallowing test was necessary. However, the speech therapist had noticed the number of times that Jon coughed during meals and has always wanted to know exactly what was going on so she has ordered a swallowing test for tomorrow.

When setting up the appointment she informed me of still more new changes in Medicaid. If you remember the four things$3.91 @ day was to supposed to cover (therapy, medication, transportation and wheelchairs) it wouldn't surprise any of you to know that starting in October we may have to start paying transportation costs for trips outside the Center. It was supposed to go into effect tomorrow but the Admission Director said emails had been flying all day and the last word was No, the charge wouldn't be passed on to residents. However, what are the odds?

That's all for now, thanks for checking in.

Holey Moley- What now?

2009-09-26T09:17:00.002-04:00

Several new developments: The Village must have decided that they had some dead weight to get rid of and people have been leaving left and right. Unfortunately in our estimation the wrong people are not being given a fair chance and the ones who should be leaving are still hanging on! Jon’s physical therapist was one of those who left and we are overwrought, to say the least! Jon’s therapy had been cut back earlier to 3 times a week and in the week Matt has been gone he hasn’t had therapy once.
When I questioned the director she had no idea why Jon wasn’t getting any at all. My guess is that the cut to three days was probably made due to the new way Medicaid is handling payments to rehab centers and nursing homes. Instead of the center billing Medicaid they, Medicaid, in their ultimate wisdom, are giving them a grand total of $3.91 a day per Medicaid patient to cover: all therapies, medication, wheelchairs and transportation.
Due to the lack of therapy there is a good chance Jon will be sent home at the end of October. We are still hoping to get him to Dodd Hall for some training for us but getting therapy there at the same time may be next to impossible.
Last week Jon had an x-ray of his stomach which still remains bloated. It showed the usual back-up in the bowels and was supposed to start a regular routine to address the problem. The x-ray also showed a part of his lower lobe of one lung and it looked suspiciously like he had pneumonia again so they set up a CT scan which was done on Tuesday. Thursday evening the results were back-yes, pneumonia- and they inserted still another PICC line (which they should have left in place the last time instead of removing it!) so they could start him on zosyn again. It’s a strong medication and needs to go into a larger blood stream.
I have had meetings 3 days this week and have only seen Jon in the evenings. They have changed his rising time so the night staff gets him up, dressed and in his chair before 7 so I expected to see him tired when I got there but he has seemed exceptionally whipped. He says he’s been having trouble coughing and has done quite a lot of it.
Tonight I got a call from the Village saying they were sending Jon to OSU--they weren’t sure of the reason--just that Dr. Conaway’s nurse practitioner had seen something on the CT scan she wanted checked out. Barb called to say that when she finally got in to see Jon the staff wasn’t sure why Jon was there, they were to check for possible pneumonia? and they were sending him to x-ray. Barb was livid. She explained about the scan and the medication so OSU called the Village. From what Barb could gather the Village sent him to OSU because they were understaffed and he could get better treatment there!!! Just got a text from her saying: “Dr said not a valid reason. Jon lives there. They can’t just send him out 4 the weekend. If they can’t find a valid reason to keep him he will go back 2night.” She added that the PICC line isn’t working right so they had to put in still another IV line to draw blood. Poor Jon! ...and poor Barb, she was looking forward to being able to go home by 9 and kick back and I came home yesterday to finally have my colonoscopy which had been rescheduled 3 times so I’m of no use at all. His Dad already left and said he’d be back tomorrow...no point in hanging around, I guess.

Barb called to say Jon left OSU around 8:30 and was headed back to the Village. ER couldn’t find anything they hadn’t already found and was being competently treated.

One other flaw in the ointment. We have had trouble with the applications for waivers for house modifications, a vehicle, outside professional help and the wheelchair. (While Jon presently has a wheelchair it is a loaner from the company and a new one will be made according to his specifications when the waiver comes through.) The first round of applications through Jobs and Family Services have been denied and we are waiting word on the second set. Some other grants are already out of money and none will be available until after the first of the year and are not yet taking applications. Those of you willing to help with a ramp email me at castanienm@yahoo.com and we’ll at least get started on that. Thanks.

Progress--Slow but Steady

2009-09-17T22:36:00.003-04:00

Jon continues to make good progress. He is now off the feeding tube and takes all his medicine orally. If he remains stable for 6 weeks without needing the feeding tube for anything-including meds- it can be taken out. His visit to the urologist went well-nothing appears to be wrong and he learned about the other options to total catheterising. His physical therapist has won two arguments with the staff. One we welcome and another we look on with some trepidation. A few weeks ago the railings on Jon's bed were removed because they are "restraints"--ones we welcome but nevertheless restraints in the eyes of the government. Matt (PT) has been wanting to get rid of the bed we thought we would like but never really seemed to work in with their wound care practices. In addition, it didn't get all the servicing we thought it needed. Anyway, a new bed came today...minus any railings and narrower. It, too, is an air bed. It can be set to several controls and at the moment pulsates every ten minutes.

The other point Matt has been trying to succeed at is getting Jon on a bowel control program. He was finally successful and we are pleased. On the 29th Jon has an appointment with an Ears, Nose Throat Specialist to set a timeline for getting rid of his trach. The optometrist comes tomorrow and we hope he brings Jon's new glasses. His old ones are really pathetic. How they survived the accident is beyond me.

Whoops, My Apologies

2009-09-08T08:09:00.002-04:00

Where does the time go? When Barb and I get home from the rehab center we are both exhausted and there are chores there to do also. When the wound vac came off they ran a culture and found that it was positive for mrsa again. That's the bacteria that is highly resistant to antibiotics. It's my understanding that it never really goes away completely and is apt to reoccur. There are 5 antibiotics that still work and I notice that his present one is the third one of the five that has been used for one thing or another.

His mood is generally good although last week I didn't see the sparkle in his eye that I usually see. He continues to enjoy word searches. Last week I was trying to talk to one of the other patients and he was naming off words he had found and I finally handed him the pen. He could circle about 3-4 words, sometimes using the left hand to steady the right one, before he handed it back to me. I bought a new game called Sort It Out while I was in Baltimore which I think he will enjoy. You have to put 5 sets of things in order from great to least (or visa versa) or the time in history they occurred, etc. You get a point for each item you have right.

He continues to gain weight which is good, at least in their eyes. I don't know if they realize how much more than his normal weight he is putting on. He usually weighed some place in the mid 140s and he is presently at 152 (+?) I'm not sure they realize the strength capabilities of Carol, Greg and me! They have cut his night tube feedings in half and we are really looking forward to the time they decide to stop them.

I'm taking Carol back with me today and so I hope to have a more complete report for you soon.

Again, my apologies for the delay. I can't get over how many of you check in on a regular basis! Thanks ever so much.

No More Wound Vac!!!! No More Wound Vac!!!!

2009-08-26T23:38:00.002-04:00

I told Jon Tuesday that I may only be able to come up for 15-20 minutes on Wednesday as I had to work at the church in the evening. I had trainings all day. The morning training ended way early and they let us have a very extended lunch so after typing the blog about the field trip, I went over to see Jon. He met me in the parking lot. Instead of saying "What are you doing here? I wasn't expecting you" as I thought he would, he started to sing.
It was to the tune of Ring Around the Rosie. It went like this:

"No more wound vac, No more wound vac.
I don't have to wear a wound vac.
I should drink a six pack, I should drink a six pack (keep reading).
But I won't and I can't. I don't even want to. (!!!!!)
No more wound vac. No more wound vac."

He continued on saying that they will use a cream for what is still left. "Matt is excited. He won't have to take it off (the chair) and put it on the mat anymore where it gets in our way. It won't stink anymore".

Obviously he was very excited about the wound vac being taken off. That is one of his goals!!!. It just makes it nicer all the way around. The hole is only the size of a quarter, including the depth.

I forgot to say that the sputum test came back negative. Yeah!! Although he is still coughing alot. He has finally figured out that if he leans forward that it comes out alot easier. Last night and tonight he got quite a bit out by leaning forward and coughing. The urine test is still not back yet. Although Matt commented on the amount of sediment still in the catheter. Speaking of the catheter, I don't remember if I wrote yesterday that it had backed up. He had no output from 6:45 am to 3:00 pm. They had to put him back to bed and put a new one in. He was one tired puppy last night when they put him back to bed for the night. He was falling asleep in the chair and therefore was cranky when they finally got around to putting him to bed. He had a long day.

Tonight Mark came back to visit. Jon was saying that the 26th was Marks' birthday, the day after our mom's and Mark said yes. Jon didn't say anything and finally Mark said "So are you going to say Happy Birthday?" Jon laughed and said he thought today was Friday not Wednesday. Anyway, both Mark and Jon had a nice visit.

It's late and I am tired. I did go back over to Jon's at 10:15 after I got done with my job at church. He was already tucked in and we just chatted. I just got home at 11:15 and started his laundry.

God bless you all and thank you for checking in.

Love,

Barb

Field Trip

2009-08-26T10:44:00.002-04:00

Jon and 2 others with their families went on a field trip to Drew's house. Drew is also a quadriplegic like Jon. He has use of his arms, can bend his elbows and use his wrists but does not have use of his fingers. He lives by himself. He has Aides come in the morning to get him up and in the evening to put him to bed. A nurse comes around 5:30. He works fulltime and drives a van. With the exception of his bedroom, his house looks like anyone elses. The modifications were made with things that you find in any home improvement store, not special orders or special equipment. His floor plan is open so he has no hallways. His kitchen counter and table are lowered to wheel chair height, he keeps his microwave on the table so he can access it. His cupboards have the slide out shelves for accessibility. He had to re-do the office floor as it was a sunken room. He leveled it out and put down a hardwood floor. His computer mouse is the ball and has 4 programmable pads. He is a photographer and has a studio in his house as well as going to an office. He uses a pencil in a hand brace to type. His bedroom door has not been modified and Jon was able to get through it!! He had about a 2 inch clearance. The bedroom has a lift attached to a track system on the ceiling. It is much less bulky than the hoyer lift at the center. The track system goes over his bed and continues over to the bathroom. The bathroom has a door on it but is open above the door for the lift to go on the track. The lift ends over a shower chair. He moved the wall out 1 foot. It is a sweet setup. The sink is outside the bathroom like you find in hotel rooms. It was like that to begin with. He lowered the height, set the sink back just a little so he would not get his shirt wet. The trap under the sink was adjusted so that he could get his chair all the way under. The closet doors were removed and a closet organizer system (from Lowes or Home Depot) put in. It was really nice and very nice of Drew to open his house for us to see.

While we were there, Jon's friend Mark called me. I knew he was in town but didn't think he was coming until Wednesday night. It was nice for him to see the changes, since he is in Defiance and I am down here he can help Mom with some changes that need to be made. Our Uncle Frank is in construction and helped re-do our cousin Marks space and our cousin Dean is in construction so we have several people to help. Of course Dad also has construction experience. We will still need people to help with the actual work as Uncle Frank is in Florida and Dean is in Marion. After we got back to the center, Jon and Mark were able to visit and catch up.

Thanks for checking in.

Blessings,

Barb

Visit to Neurosurgeon

2009-08-25T10:39:00.006-04:00

I just read Barb and Jon's last post and can't believe they omitted the visit to the neurosurgeon last Thursday. Instead of being put on a stretcher Jon stayed in his power chair and rode in an ambulette. It gave me a chance to see what all has to be done when Jon rides in a van of his own and I can see that we will have to allow a good 15-20 minutes (if not more at the beginning) before we even start the car!

He had to be lifted out of the chair and onto the bed for the CAT scan by hand instead of a lift but could have the x-rays while still in the chair. The doctor was very pleased with both sets of pictures and also with the range of motion Jon has in his neck. I forgot to ask if he was cleared for having dental work done but I think that can be done by phone. While we were talking I showed Dr. Mendel how Jon's right wrist is tending to pull toward the left and he suggested taking it up with his rehab doctor. I responded we didn't have one but one of the other doctors checked the chart and said we had one assigned to us at Dodd Hall and we could refer back to her. We were only there for a week and I remember her introducing herself but forgot her specialty and didn't realize she could follow us wherever we went... good info to have!

Another bit of info I'm surprised they omitted was his visit to an optometrist. One visits the Center every 6 months or so and we were lucky enough to get Jon's named added to the list of patients he would see this trip. His prescription hasn't changed that much but his frames and lenses were in dreadful shape. They had survived the accident and we had kinda gotten them straightened out but the lenses had many scratches on them. He chose from the 12 or so sets of frames and they will be in in a couple of weeks.

Next on our list is dental work. They have a dentist who comes and "cleans" teeth but Jon's cleaning seemed cursory at best. He still needs to have a bridge made and a really thorough cleaning done. One step at a time, I guess.

Can't think of anything else. The weather in the Chesapeake Bay has cleared up, the sky is a gorgeous blue with just a few puffy clouds and we are headed to Annapolis. Hope all is well with you.

Jon Writes this Blog Entry

2009-08-24T23:07:00.003-04:00

Hello all. Once again, I have to apologize for not posting sooner.

Jon has decided to write this one...
Barb's been busy but not as busy as I, who was caught speeding in the hallways. I was not given a ticket but was told that next time I "would lose my license"!. It was by one of the members of the "babe patrol" that works here. I have been basking in the sun enjoying the sunny days but not fond of the breezy, chilly days. I'm working hard in therapy, lifting weights, sitting up balancing myself.

Barb is getting so good at working with me that the aides consider her a fellow aide. They threatened "to fire her" when she's late or can't make it due to her other jobs.

Well enough for now. I've got to go. I'll let Barb throw in her two cents.

Love you all, Jon (written Sunday pm)

Mom is off enjoying time with her siblings on her brother's boat for 10 days. A well deserved rest, that happens to be over her birthday too (Aug 25). This weekend was full of visitors. On Friday, Greg came down for the weekend. Jon had been asking Angelique to print out the blog for him as we don't have internet there. She sent down a very nice binder with a table of contents and all the entries and comments from day one. It is 117 pages long!!! He started to read some of it but it is much longer than he anticipated. It was a bit overwhelming for him but he is very grateful for it. A friend of Jon and Greg's got married and the reception was Saturday. The Groom himself, Paul, and a friend came over before the reception and visited with Jon for a little while. Then Uncle Bill and Aunt Judy surprised us and stopped in. Uncle Bills' brother is in the hospital, please pray for him, and they decided to stop in to see Jon too! Aunt Judy just couldn't stop commenting on well Jon is doing and the improvement he has made since the last visit. Then cousin Dean stopped in on Sunday and spent a few hours with us.

Today, Monday, Jon started to read his visitors book from the first day of the accident. It has been awhile since he has looked at it from the beginning. He was amazed at the number of people that came to see him just in the first week! He will be doing a lot of reading between the blog and the visitors book.

Hope this finds everyone well. Blessings to all.

Barb

Making Great Strides

2009-08-13T21:52:00.004-04:00

Mom & I (sister Barb) apologize. We didn't realize it had been a week since the last entry. We appreciate all of you that check in daily and numerous times throughout the week.

Jon has been doing very well. He decides that he is going to go for a cruise and announces "I'll be back". He goes to visit others or just cruises around the center. It is good to see this. In the beginning with the wheel chair, he would only drive in 1st gear (it has five). I had to coax him into 2nd. He went into 3rd and 4th on his own. Now he is driving inside in 5th gear!!!! One of the nurses was teasing him saying that they were going to give him a speeding ticket if he didn't slow down! I told him "Don't you think 5th is a little fast inside?" He replied "I only go in 5th when no one is in the hallway" and "I let ladies go first". Obviously he has become very comfortable in the chair.

Sunday morning, Jon & I had taken a walk - Jon showed me the grounds and I showed him the inside of the retirement side (I had taken some weight loss classes a few years ago in their conference room). He really liked the inside of the retirement side. He said the Dining Room was much larger than his, it had lots of seating, a pool table(!!) and a fireplace. He apparently liked it enough that he took Angelique over to see it. She had come down for a friends' sons birthday party and to visit with her Uncle J! She enjoyed her visit. She and I left at the same time - I went to a birthday party (last minute invite only a few blocks from Jon) and while I was there Jon called me as he was having difficulty breathing. He has been taking his cap off and coughing. This allows him to bring the mucous through the trach and out the end. He had 3 really good coughing sessions and got quite a bit out. He had also been suctioned after the coughing sessions. Nevertheless, he decided that he wanted me there with him. Sometimes just having someone close by makes you feel better, so I came back. After he was put to bed, he was suctioned again.

Jon would really like to get back to Defiance soon. He asked Matt about what the goals are for him to go home. He needs to: 1) Get off oxygen 2) Get rid of trach - which means no more suctioning. He needs to be able to get it up on his own 3) Get off the feeding tube 4) Get on a bowel maintenance program 5) be able to transfer from a bed (not his current one) to a regular wheel chair 6) use a regular wheel chair. I don't understand the regular wheel chair requirement. If he is going to use the electric chair then why does he need to learn from a regular wheelchair?? Maybe back up, I don't know. Mom just now informed me that the projected date for all these to be met is end of the year maybe as early as Thanksgiving. This is a little longer than I had hoped. He is still looking forward to going to Salt Fork this year for the Castanien Family Reunion.

Sunday evening had been his last suctioning until tonight so it has been 4 days without suctioning. We will restart the number of days starting with Thursday evening. To go 4 days is great!!!

On Tuesday, Matt informed Jon that Medicaid would no longer pay for 5 days of therapy. Each form of therapy (Physical, Occupational and Speech) would be 3 days a week. During the other 2 days, Jon is to do exercises on his own.

Carol came down Tuesday and went back this evening. She went with him to his therapy sessions, helped him get his meals ready to eat and spent time with him. They enjoyed their time together.

(Jon continues to work on keeping his balance while sitting on the edge of the table, having his leg muscles stretched and practicing the pattern of push and slide on the transfer board to get on and off the bench. In occupational therapy he has been working with weights. His arms are not evening strong so he is working with a two pound weight on one side and a one and a half pound on the other. He continues to work with the peg board--I slipped and started to write peg bored which may be more truth than a slip of the fingers....Barb read this to me last night and asked what else she should put and both of us needed to get to bed so I didn't even try to think of anything else but this morning I thought you might like this info, too. Marj)

Steady Progress

2009-08-06T23:07:00.003-04:00

Jon had an opportunity to fend mostly for himself this last week-end. I took Barb back to Defiance Thursday evening. The Defiance theater group was putting on the play Nunsense and I decided to treat the Castanien gals to dinner and the play. We laughed ourselves silly. We didn't get back until late Sunday afternoon. We were a little concerned about Jon since he tends to stay relatively close to us when we are there but I had reports from several people that he got out and among the other residents and seemed to do just fine. The staff saw to it that his food was cut, etc. and his Dad spent more time with him also.

It has been a fairly quiet week. Jon continues to work hard in both physical therapy and occupational therapy maintaining his balance and gaining strength and muscles. The physical therapist measured the angles for when Jon turns his head. He can turn it to the right at a 54 degree angle and to the left at 50 degrees. The sputum culture finally came back and was read. It was decided that while the infection was not great it would be treated anyway with an antibiotic strong enough that it required a special IV called a PICC line. Some of you may recall from earlier days that he already had one but several weeks ago it got caught on his shirt when he was being undressed and it was pulled loose and had to be removed. It was replaced tonight after supper.

We did have two visitors this week. An "older man and a young kid," as described the receptionist, came to visit. It turned out to be a certain pilot and his son who just happen to be relatives. They stayed much longer than they intended and we were all kept in stitches. The concept of being "older" seemed incomprehensible to all of us.

Barb and Jon went on another excursion this afternoon to Kohl's to get a farewell card for one of the nurses who was leaving. She has done a super job in taking care of Jon and we will miss her and her good humor very much.

Thanks for checking in...we really appreciate it. Hope your summer weather has been enjoyable. We've talked Jon into spending more time outside and I can't help but think that it is in part responsible for his change in attitude.

Me & Uncle J

2009-07-29T21:39:00.003-04:00

I had a nice visit with Uncle J on Sunday. I got there about 2:00 and Uncle Greg and his friend were still there. They stayed until about 3:00 and then it was just Uncle J and me. We talked a little, watched tv a little, and just hung out. I stayed around to help him with dinner. He ate almost all of his dinner and he fed himself the whole meal. I only had to help getting him situated with his tray and getting him drinks. It was nice for me to get to see the steps he has made! I don't get to go as often, or during the week, so I keep myself updated by the blog like everyone else! After dinner, Uncle J even said he would escort me out to my car. I think it is awesome now that he has a chair and can be mobile! I got a little worried about him going back inside after I left. I drove slow and saw him going in the front door but the door shut and knocked his wound vac off the back of his chair. I had just thrown my car in park, grabbed the keys and was running out to help him when I saw the receptionist coming to help him. All in all, it was a pretty nice visit!

Look Who's Browsing at Kohls!

2009-07-29T20:46:00.012-04:00

There is a shopping center one short block from the Villages of Westerville and the physical therapist decided it was time that Jon and another gal in similar conditions should try their hand at maneuvering the aisles of a department store. Off they went early Friday afternoon. They had to go down an incline to get to the sidewalk and then cross the street and wheel down the sidewalk.

We discovered when we got to the door that there was only a button the size of a quarter to push for the door to open automatically. On the way out the button is right on the door frame which would be almost impossible for anyone in a wheelchair to get close enough to actually push it. For those whose handicap would be heart related etc. it would be adequate, but not for these two!

I am proud to say that they both handled their chairs like pros. Nothing even came close to being knocked over and with Jon’s oxygen tank hanging out so far behind him that is really something. They wandered through both the women’s and men’s departments, through the shoes and even stopped to read some of the greeting cards.

They wound their way through a parking lot next to the rehabilitation center and Jon spotted two nifty motorbikes he needed to check out. When they got back to the center they drove their chairs over some grassy areas to get the feel of it. Some stretches were flat but they tried their hand at some small hills, too. It was a great day.

The only downside was the official notification that once again he has a urinary infection. That is not uncommon for quads they tell me and we are valiantly trying to get Jon to understand how important drinking lots of water is. I think we've found an article that he seems to think is convincing...I hope so. Thanks for checking in. Thanks for keeping us in your thoughts and prayers! Marj

Visitors

2009-07-22T10:05:00.003-04:00

Jon has been quite busy. On Friday his Uncle Frank, and cousins Jan, Jill, Brynn and Devon came to visit. They were on their way to a family reunion on Saturday which Jon had hoped to be able to attend but we couldn't get the arrangements done on short notice so it was great to have them stop by for a few hours. I'm not sure Jon had ever seen Jill's daughter, Brynn, before and she reminds Barb and me of Jo Marie when she was at the same age. (I also thought she looked a lot like her Aunt Judy but think I was out voted.) Sunday my mother and sisters came to visit. Mother and Margaret Ann were able to stay till Monday and see some of Jon's physical therapy.

He has continued to work on supporting his upper body by making a triangle with his body and hands. Yesterday they were concentrating on retaining an upright position if he starts to lose his balance. His reaction times were good but needs to work on getting his hands in a good spot to support himself. The physical therapist gathered a group of 3 other patients who have similar injuries as Jon's and gave them a talk on how their injuries affected their prognosis. He included the staging of the muscles and it was interesting to learn that if a person can raise an extremity against gravity they have a good chance at recovering its use. Jon's also working with some weights in occupational therapy and is starting to get his upper arm muscles back.

His attitude has remained good for the last couple of weeks and he is working on learning everybody's name. It's nice to see him so outgoing again. Yesterday we spent almost a half an hour outside and I think daylight has made a difference also. He went for a long time asking that all the lights be turned off and since his bed isn't on the side next to the window he wasn't getting much light period. Now that he spends a lot of his time in the lounge which has several windows he's getting much more light.

On the down side he's just finished his antibiotics for a urinary tract infection and it looks like it's back again--or never really clearedup. We just can't get used to how much liquid he needs to keep this controlled!

Thanks for checking in and keeping Jon in your thoughts and prayers. We appreciate it. We especially thank Reibo for his frequent visits throughout the week...Jon really appreciates them.

New Firsts!

2009-07-15T10:31:00.002-04:00

Saturday everyone traveled to Columbus to celebrate Jon's and his father's birthday. Jon was up early per the new schedule and I was afraid that by the time 2:30 came around he would be a whipped puppy. As it turned out he was still going strong early in the evening. Each day he has stayed up a little longer and yesterday he was in his chair for 14 hours!

He has a new tray that fits on the arms of the power chair which makes it much easier for him to feed himself. Last night, once I cut his meat for him he did most of the work. He would ask for a drink and then go back to eating. His friend, Mark, has been there about suppertime and has kept up a steady stream of conversation and encouragement which also helps.

There's been a welcome change in Jon's attitude. Up until last week Jon was satisfied with leaving the room only for therapy. I did occasionally get him outside for a short pass down the driveway and that was it. Now that he's up longer he's more like himself and stops by various rooms for conversation....that's more like the old Jon. Being in his room is quite cramped since it's hardly made for a chair as bulky as his (plus a room mate who also has a wheelchair) so he prefers to spend a lot of time in the lounge (which also has more comfortable seating for Mom and Dad and any other visitors!)

I arrived late yesterday so I came in the middle of physical therapy and missed occupational therapy altogether. Jon was working on sitting by himself on a bench. Matt was showing him how to position his arms so that the arms worked with his body to form a triangle. When Jon mentioned that he had already managed to sit by himself for 35 seconds Matt's competitiveness kicked right in...35 seconds, 40 seconds, right up to a full minute! They were both quite pleased, as was I.

Must get going, have got to see what I've missed so far this morning.....Thanks for checking in.

Another Year Rolls By

2009-07-09T22:57:00.002-04:00

Jon had a pretty good day today. He was dressed early this morning so that the first shift could get him up in his chair to eat breakfast. While we love the bed because we don't have to be such worry warts about his being turned it is an absolute monster when it comes to eating in it. It's back is rather slippery and when he is pulled to the top of the bed and then raised to a sitting position it is like watching him slide into a swimming pool! His final position is not a good eating position and he still does a lot of coughing and choking while eating.

The word got out that it was his birthday and so a good number of people stopped by to wish him a good one. He did finally agree to going outside and staying there for 15 minutes instead of a quick pass from one door to the other. There is a nice shady area with a bench that we sat at and talked a bit.

Barb brought a delicious steak, sweet potatoes, baked potato and salad for his birthday supper. She bought one huge meal and split it 3 ways. No complaints (or coughing) during this meal!

Evening brought many phone calls from family and friends. A beautiful basket of flowers arrived earlier.

Many thanks to all of you for helping make this a good day for Jon. Tomorrow it is his Dad's turn -- Jon was his birthday present many years ago as he looked forward to having a boy. (He enjoyed the girls but they aren't the same!)

Birthday Boy

2009-07-09T14:58:00.001-04:00

Today is Jon's Birthday. We are all going down to see him this Saturday. But, if you've got time, stop in or give him a call!

Thanks!

Up twice in one day!!

2009-07-02T23:17:00.004-04:00

Well, Jon got up in his chair after all this morning. Rick, the chair rep, finally came today to do the pressure mapping. So Jon got up, ate breakfast in the chair and then went down to physical therapy. I wasn't there but according to Mom there weren't any areas they had to worry about, the seat is good! I was quite surprised to see him back up (for the second time today!) when I got there around 5. We went down to the activity room where Jon joined us in eating some pizza!! We went back to his room just to get a game and go back down again to the activity room. We played Password. When we started on the second card (there are 10 words per card and we each had our own), Jon said he was tired and wanted to go back to the room. He needed suctioning after he got back into bed.

Matt said that there is a young woman (around 26) that was shot in the neck and has the exact same injuries as Jon (complete injury at the C-6). She also has a 3 year old daughter to raise. So she has something to work toward. She does not have a power chair yet but when she does, Matt would like them to meet and have some therapy together. This will give someone else for Jon to talk to that has the same damage. Maybe when he sees her determination, he will get some too. Matt is also going to ask a man that has been a true quadriplegic for 40 years to come in and talk to Jon. He has to use his mouth in place of his hands, just like Joni Eareckson Tada (internationally known quadriplegic that has become a disabilities advocate.) Jon and I watched the movie on Joni (it's actually pronounced johnnie - her dad wanted a boy). Since her injuries were not the same he didn't seem to connect as well as I had hoped. He said "she's gone through a lot". With this young woman at the center, he should be able to relate. I think it will be very good for him to talk to someone that can truly understand what he is going through. We try but we can never truly understand.

Mom said he seemed to be in better spirits today. He went down to visit his old roommate Jack from CRSI that is at the this same facility. Jack's room is on the way to the therapy rooms so Jon tries to stop on the way down each day.

The goal is to get Jon up twice a day. I am trying to get him to go outside for the 4th of July fireworks in Westerville. His parking lot should have a relatively good view. He told me today that he hasn't done fireworks for a few years now. I think it would be good for him but I don't know if he will go for it or not.

Thanks for checking in. Please continue to keep Jon and the family in your prayers. Please add this young woman with the same injuries Jon has to your prayer list as well. Thank you and God bless you.

At a Snail’s Pace

2009-07-02T08:24:00.004-04:00

June 28
Progress seems so slow when you are as close to Jon as we in Columbus are. On the plus side Jon is spending more time in his power chair. He gets dressed and into the chair by 1:00, just in time for lunch. At 2:00 he has physical therapy, usually followed by occupational therapy. He’s still working on stretching his neck and shoulder muscles. In occupational therapy he continues to work with pegs and squeezing play dough between his thumb and pointer finger. In addition we are still experimenting with different silverware and eating techniques. By evening his arms are getting pretty tired and shaky. If he coughs with his fork in his hand I try to keep a hand between his fork and chest so he won’t accidently stab himself! After therapy he’s free to roam the place and while my Mother was worried about how fast he might scoot around in his power chair she needn’t worry--the turtle would beat Jon in the proverbial race with the rabbit!

In speech therapy he is working on drawing conclusions--he played a game of “what if...? For example, what would happen if every family in the United States had 10 children? Half a dozen conclusions come readily to my mind!

Jon is still fighting several infections and I guess I need to remember that those things slow a person down. I’ve been really on him for not wanting to eat as much as he should. He thinks he has been exerting himself quite a bit and I suppose if one considers how digestive tract infections can slow a normal person down then he probably is working hard. A wound vac is back on his bedsore--a disappointment to Barb and me since the new bed has such great promise even if one only believes half of what sales reps say.

Wed. July 1
Jon had a really rough day yesterday. His morning blood pressure was 132/83 and should have been a red flag for the staff. I'm not sure exactly sure when it was taken but not at a time when his Dad was there and it could be written down. I don't recall it being high at physical therapy but later in the day he had problems with his catheter being blocked. It was removed but nothing done for about 4 or so hours. Once it was replaced(for the second time in a week) there was still a lot of sediment in the tube and his blood pressure was at 134/65...still high with red flags flying. We followed the rule about sitting up and after a half hour it went back to 116 over 60 something. So we put away the word search we had just completed I laid him back down and said goodnight. (Blood pressure has a habit of going down when sitting in an upright position so when it is more than 20 points higher than normal he has to follow some protecol for lowering it. We had already checked the urine problem and the bowel problem couldn't be dealt with at the moment.)

He had a rough night from what his dad said a few minutes ago and he doesn't really want to get out of bed. That's a big mistake so I'm off to exert some maternal pressure! He's been having problems swallowing and can't really get to a 90 degree upright position and has been having some problems with coughing during eating. The theory being if he was up in the morning he could be in the chair for both breakfast and lunch to see if that was beneficial.

He didnt fall!!

2009-06-22T23:19:00.004-04:00

Jon's physical therapy went well today. The Physical Therapist Assistant taking over for Matt came down and the 3 of us (PTA, Aide, Barb) got him into the chair okay with no incidents. Jon then ate lunch. It was an okay lunch. He didn't eat as much as I wanted but it was half way decent. In physical therapy she worked his shoulders and neck!! He had his brace off when I got there around 9:00. He let me put it on around 11:00 and then we took it back off for his therapy. I have friends at the nursing center and the husband, Bill, came down. He told Jon not to let the PTA give him a hard time. That she can be hard core. Jon replied "She's been pretty hard on me, but it's okay, she's easy on the eyes." When she heard that she turned beet red. She said she has 10 shades. One is normal, and that she was probably a ten now. She is very cute.

He was pretty wiped out after getting back into bed. He was up in the chair for 3 hours.

His friend Mark and his sister Jody came up to see him tonight. Jon was in a good mood and seemed to enjoy them. He got a little sad at the end of the day. I'm not sure what happened but by the end of the day, Jon was getting teary eyed. When Mom asked if he was okay, he said no but didn't want to talk about it.

Overall it was a pretty good day.

God bless you and thank you for checking in.

Building Blocks of Success

2009-06-22T22:05:00.004-04:00

As part of his therapy, Uncle J works with blocks as shown in the picture on the left. He works on picking them up and putting them in the peg holes. I haven't been there to see him do much therapy since I am there on the weekends, but from what I gather, he has been doing fairly well.

"Block" on, Uncle J!

Slow weekend

2009-06-21T22:17:00.004-04:00

It's been a busy time for me (Barb) and unfortunately Jon has not had visitors this weekend. Friday night I watched children at church for a spanish speaking group. Saturday morning I stopped in and had Jon sign 3 cards! He signed his name in cursive. He did a good job. :) One for Dad for Father's Day, one for nephew Joshua (his birthday was the 18th and he turned 20!!) and one for niece Angelique (her birthday is the 25th and I will let her tell her own age now). He had the front of his neck brace off when I got there. The back was still on and was soaked. I took it off, washed the neck pads and showed the nurse how to put it back on. We had a cookout for their birthdays and for Father's Day in Defiance. I did not get back to see Jon again last night until 8:20. He said it was quiet all day. He still had the neck brace off so I put it back on for the night.

Today, Dad got there around noon. I went to second service and then to a graduation party and worked for about 2 hours doing payroll (something my workers might appreciate) and catching up on other things at work. Aunt Judy and Uncle Bill stopped by on their way back home from Rhode Island. Jon said he enjoyed their visit. Dad stayed until just after 5:30, so he spent a good portion of his day with Jon which is nice for Father's day. I didn't get there until 7:20pm :( I found that he had his neck brace off again. When I asked if he had it off all day, he said "You can put it back on" so I am assuming it was off all day. The instructions were for a few hours at a time. With the goal of having it off permanently in six weeks. We talked for a little bit and then we did a word search. He is good at finding them and seems to enjoy it. I waited until his next check which should have been done around 9:15. I'm glad I stayed. His C-Diff seems to be coming back. I noticed "the odor". So I mentioned it to the aide and she said the last 3 checks he has had diarrhea. She said this morning he was solid. Not good signs. I told the nurse and she is calling the doctor to get an order for a stool sample which won't be taken until tomorrow since it is so late tonight. We still have no appointment for the colostemy. It is taking alot longer than I anticipated. Hopefully Jon won't change his mind before they get around to it. I left at 10:00 pm.

Tomorrow will be the first day of physical therapy without Matt. He is on vacation and one of his assistants will be working with Jon. It will also be the first day of getting into the chair without Matt. All last week, Matt worked with Mom or I on getting Jon into the chair using a lift. He wanted us to know so that we can tell the aides how to do it. Some of them don't really like it when we try to tell them about Jon as they think they already know it. Spinal cord injuries are different and they don't realize how different they can be. The lift itself is the same but putting Jon into the chair and making sure he doesn't fall out is different than what they are used to so we will see how they do with it. I told Matt to show the aides himself and he said he would rather show us and for us to tell them. I said "Okay". The foot rests stick out too far for the lift to get as close as it should, so when the lift lowers him, Jon sits on the edge of the seat. We have to hold onto him and recline the chair in order to get him all the way back into the seat. Matt's biggest concern is that if Jon's muscles go into a spasm as he is sitting on the edge of the seat that he could fall out. Thankfully Jon does not have many leg spasms and is only on the edge for less than a minute but it is still a real possibility. Please pray for Jon and the transfers. He will get into the chair around 1:00 and back out around 3:00pm. He will also be able to eat lunch in the chair which will really help with his swallowing and feeding himself since he will be up at a true 90 degrees.

Jon's friend Mark is working down here again this week and so he said he would stop by and see Jon in the evenings. Jon is looking forward to seeing him tomorrow.

Thank you for checking in.

"O frabjous day! Callooh! Callay!"

2009-06-18T22:17:00.006-04:00

This is a quote from a poem about slaying a dragon by Lewis Carroll of Alice in Wonderland fame:

"And, has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!'
He chortled in his joy.

Jon's dragon these last 8 months has been his head gear. First, the halo and then the Miami J neck brace. We spent a total of 4 and a half hours at OSU getting Cat scans, consulting with the doctor and then back again for x-rays, that were initially ordered but not communicated to the EMTs. Dr. Mendell looked at them and pronounced the spine healed and stable. Only one hitch; what looks like the major point of impact at the 5 T vertebrae looks almost like the spine is making a major turn toward the front of his body. The doctor didn't think that the spine was being pulled toward either side of his body but he didn't have any other explanation why he tilts so in bed. It may just be due to poor trunk control (my guess, not his.) He is allowed to remove the brace gradually. At first, when he's not very active and after he has built up some strength through physical therapy he can be without it for longer periods of time. We go back in six weeks for the final word. Dr. Mendell also had no idea why either of the two operations involving the spine that were suggested several months ago would even be considered. Redoing the back in major surgery seems like a step backward to him and he never heard of stretching the muscles by weakening them--perhaps I just didn't explain it well. Although he was very surprised they did not do surgery in the very beginning, before everything had a chance to heal.

Other news: he has major constipation and a urinary tract infection. X rays show there is no other problem than constipation to make his tummy swell so that's good news.

He has been in the chair almost every day and is gaining confidence in his driving. Matt, the physical therapist, is changing the handle from a joy stick to something that will look a little like a goal post. The pressure mapping has still not been done due to the chair reps computer program not working. Although the pressure mapping will allow Jon to sit in the chair for longer periods of time and not endanger the healing process of his bedsore, he has a reclining feature as well to help relieve the pressure of sitting upright. Matt has Jon reclining every 20 minutes for at least 30 seconds. Jon usually reclines for more than that.

The special bed has not gone back yet and we think that we may have some valid reasons for continuing using it. We just have to convince the doctor at the Village that a paralyzed person with arthritis of the spine, in addition to his blown vertebrae, needs to have a bed which is healing and prevents further sores from developing.

Jon has had the pleasure of a good friend from Defiance dropping by three evenings this week. He wasn't feeling great the third day but hopefully that won't interfere with future visits. Thanks so much Mark for stopping by. We really appreciate it.

To see the whole poem go to: www.jabberwocky.com/carroll/jabber/jabberwocky/html The poem has been set to music and we had a great time singing it in my high school choir days.

More surprise visitors

2009-06-15T22:29:00.005-04:00

Jon did not need suctioning today until we were getting ready for therapy. He needed suctioning as we were getting him dressed and then an hour later. He ended up being suctioned 4 times in 6 hours. He is coughing alot up on his own but still has alot being suctioned out. He was in the wheel chair for 2 hours again. They were supposed to "pressure map" his seat in order to allow him to sit up in the chair for more than 2 hours. The chair rep got his days mixed up and won't be out until tomorrow. Hopefully starting tomorrow we can get him up a little longer. I will let you know tomorrow what "pressure mapping" is exactly. My understanding is that they use the computer to find out where his pressure points are and then adjust the seat accordingly.

Yesterday among the human visitors we also had a rabbit visitor come in. A lady that lives close by has 4 rabbits and brought in her Fleming giant. He was 40 pounds!! I had her take him into Jon's room so he could see him and Jon flipped out. He is the largest either of us has seen before. Today she brought in it's mate. She is only 17 pounds! Still a rather large rabbit but not nearly the size of Big Bun (short for Big Bunny). Tomorrow she will bring in the other 2 they have. She doesn't know anyone at the center, rabbits can also be therapeutic and didn't know if anyone would enjoy seeing them. They have been a hit with everyone that has seen them. Jon was able to pet the one today.

While Jon was eating dinner (rather late tonight - arrived at 6:50), Greg called and wanted to know where I was. I said with Jon. He said good, go to the front desk. Mark, a friend of Jon's was in town. He has been traveling back and forth daily from Defiance to Columbus for work. He was finally given a hotel room instead of traveling 5 1/2-6 hours round trip. He surprised both of us. He will be in town until Thursday for work so we will get to see him for alittle in the evenings. It lifted Jon's spirits.

Thanks for checking in. Mom and Carol will be down tomorrow.

A Visitor filled weekend

2009-06-14T22:21:00.002-04:00

Friday Jon was in the electric wheel chair again for 2 hours. After physical therapy was over, we went on a ride around the inside of the center and then took a short trip outside. He was doing so well on his oxygen saturation that the PT took him from 4 liters to 3 liters. He was still satting at 95 so we lowered it to 2 liters for a while. When we went outside, we took it back up to 3 liters and checked again when we came back in and it was still 95 so we lowered to 2 again. I know this doesn't make sense to most of you, the short of it is that he is able to handle less oxygen. That is one of the goals is to get him off the oxygen so it was a good thing. We took it back to 4 liters when he was put back in bed. After Jon got back in bed I read the fact sheet they out for "today in history". Jon listened to the facts okay. On the back was a word search. I thought it would be good mental exercise so I asked him if he wanted to find some. After the 3rd one he said "I'm done". I found one and showed him and he started again. He ended up finding them all. For about 3 of them I would give hints "I found panda. It starts in the 3rd row" or something similar and he would find them. He seemed to enjoy it. I went down to the activity room and asked if they had some word searchs. She said yes and gave me xerox pages of 7 different puzzles including a word scramble.

Friday evening Greg and a friend Shawn came down to spend the weekend. Jon was more communicative this weekend than he was last weekend. He was not his old self but definitely improved from last weekend.

Saturday I asked Greg and Shawn to do another word search with him. He did very well and again seemed to enjoy it. Jon was interactive with both. Jon had a rough afternoon with his breathing. He asked to be suctioned 4 times in about 3 1/2 hours. That is alot in a short time period. We used the "pickle" to help break it up more and it worked. They left about 9:00pm. I went back around 10:15 to help with the last check before the Aides shift change and then stayed for the first check on night shift. I left at 12:38 am. This night nurse is very nice and helps the aide in checking Jon so I don't have to worry about whether he will be checked and if it is on time or not.

Sunday I went in around 10:15am (so much for 8:15- my intended time). Greg and Shawn came in around 11:15 and I went to to the 2nd service at church. Dad had gone to first and so he got there around noon. During service our Uncle Bill and Aunt Judy called. I said I would call back around 1:00 when service was over. Little did I know that they were coming to Columbus as they were flying out of Port Columbus and they wanted directions to Jons'. It all worked out well though as I called them around 1:15 and they were just at Polaris. I walked them through directions on how to get to Jons and I literally got there about 1 minute before them. My mom is in Traverse City for my cousin's sons high school graduation and she called while I was directing our aunt and uncle so I called her back. As I walked into Jon's room, I was on the phone with relatives from Traverse City and Aunt Judy and Uncle Bill behind me. Greg, Dad and Shawn were already there. So Jon went from famine to feasting on visitors. Jon talked to about 5 people on the phone and then visited with Aunt Judy and Uncle Bill. After everyone left I let Jon rest and I went down to the lounge to take a nap myself. Later Jon did a word scramble on different birds. Again, he seemed to enjoy the mental challenge. We worked on exercising his hands and legs. Before I left him for the night, he said he enjoyed the weekend and all the visitors today.

It is my bedtime so I bid you all a good night and thank you for checking in. Please continue praying. If anyone would like to call and talk to Jon you are welcome to call me talk to him. If it is not a good time we will call you back. My number is 614-403-6834. I am off for 10 weeks from my primary job so you can call during the day. He is usually in therapy from 1 to 3, other than that our days are pretty open. Thanks again.

A Futile Trip

2009-06-11T00:22:00.002-04:00

Went shopping for some clothes for Jon and so I arrived on the late side again today. The nurse told me that Jon's feeding tube was clogged, again, only this time they didn't seem to be able to get it unclogged. Clogging has been a problem for the last couple of months. They had decided that this time they would send Jon to the hospital to have the tube replaced. I kept bugging her about when would he be leaving and got some answer about being unarble to reach the doctor or not having time, or whatever. Finally about 5:30--just before supper--she announced the ambulance would be there at 6. He ate a medium breakfast, next to nothing for lunch and now no supper! Not so sure how much difference it would have made but still.

On the way over the ambulance driver commented about the time difference between OSU and St. Anne's emergency room visits. OSU: average time from start to finish 6 hours; St Anne's: 3 hours. Because they had trouble getting ahold of the place he's staying they couldn't call the ambulance to send him back??? Anyway it was after 10 before arriving "home" and around 11 before he was settled in and ran out of requests.

To make a long story short there are two different kinds of installations for PEGs and we didn't know which it was. An ultra sound around his tummy was no help at all. After much rummaging for a tube that might fit it was decided that since they didn't know for sure just which kind of attachment they were making that maybe it would be best to see a gastroentestinal doc and start from scratch.

Rough Weekend

2009-06-08T09:28:00.002-04:00

Our Uncle Frank and Denise came down Friday the morning he was moved from OSU. Jon had a good visit with them. Our cousin Dean came down Wednesday and visited with Jon for over 4 hours. Jon seemed to be in good spirits then. As the week went on he started to be more withdrawn. This weekend he kept his eyes closed most of the weekend. When asked if he was tired or bored, he said both. Even Greg and Angelique could not pull him out of it. Angelique said he did laugh a time or two but he was definitely more withdrawn than usual. He is no longer watching or wanting the tv on 24/7 (which is good), as he said "the shows are tending to repeat themselves". I was able to read the first 7 chapters of 90 Minutes in Heaven in which the author died and after 90 minutes of no pulse came back to life and was singing. The story concentrates on his recovery from massive damage as his car had been run over by a semitruck on a narrow bridge. It ends up being an inspiring story. I think it is important for Jon to hear about others that have gone through tough life changing experiences and have managed to live productive and often inspiring lives. Another person is Joni Earkenson Tada who is, like Jon, a partial quadriplegic. She does not have use of her hands either but does her arms, again like Jon. She was in a diving accident in 1967 at the age of 17. She has become an artist, using her mouth to write, draw and paint. She is also known world wide as an advocate for people with disabilities.

To add to Mom's description of the bed, the glass beads are coated with soda lime silicone. The soda lime keeps a ph balance between 9 and 10 which does not kill bacteria but does prevent it from growing and spreading so the bed itself is truly part of the healing process. Another drawback of the bed is that while it does "harden" for patient transfers, it is difficult to get him turned to see if he has had a bowel movement or not. Saturday night I stayed all night and he was clean all night. Last night I stayed all night and he had to be cleaned at every check starting with the 10:00 pm check. Yesterday at 5:40 pm, while Greg and Angelique were still there we discovered that the wound bandage had come off and that there was nothing covering the wound. It was open on the sheets. We don't know at which turn it came off but it was definitely off for 3 hours. He had been checked and cleaned at 2:20 and checked again at 5:00.(He is supposed to be checked every 2 hours). At 5:00 he was checked and was clean so no sheets were removed and the bandage was not on the sheets at 5:40. The aide did not say anything at 5:00 about the bandage being off but a different aide at 5:40 pointed it out. Due to the air circulation of the bed and the silicone pulling out the moisture from the wound, he can not have a moisture barrier between him and the bed. So the "chucks" they use to keep the sheet clean can not be used on Jon. Each time that the sheets are soiled they have to be thrown away. Apparently they can't bleach and sanitize them. This is getting expensive for them. As the turns are hard on Jon he has finally decided to see about having a temporary colostemy. This will help keep the wound area free of contamination and less expensive for the nursing center. The doctor is supposed to be in this morning. When I left at 8:40 this morning I left Dad with specific questions to ask about the procedure, how long he would be out of the nursing center and therefore off the air bed he is on. Hopefully we can get it scheduled soon.

Please keep Jon in your prayers and include his depression. When the social worker saw the amount of depression medication he is on, she asked if he wanted to speak with a counselor or not. He said no but he is going through alot and I think he needs to talk to someone.

Thanks for checking in. Sister Barb

The Week in Review

2009-06-06T09:40:00.003-04:00

Overall it has been a good week for Jon. We have an entirely new type of bed. It has fluidity . . . little glass beads surrounded by silica gel are swishing their way around in the top part of the mattress. It almost looks like someone was popping popcorn. This motion is to prevent new bedsores; the silica is to absorb any moisture and keep the bedsore dry. At the size of Jon’s sore it would take over a year to heal. The manufacturer claims to heal it 4.4 times faster. It is not without its problems..the second day it started spitting fine silica on the floor. Feels extremely slick on the shoes! It was replaced and the second bed is doing well. I had a chance to look at the sore and it looks much better. Now the biggest problem is that it can’t have more than one layer on top of the mattress which is almost like chiffon. This tends to make anything on it shift downward when the head is elevated. He would definitely have needed to wear his turtle shell if he had had this type of bed in March since he looks rather scrunched most of the time. The other problem is that since the door to the room has to be kept closed for temperature control around the bed many of the staff takes that as a sign that he is busy with someone else. We’re thinking that that is one possibility why he has missed his second shower this week. Since he missed both shower days the week before by being in the hospital he is well overdue! I thought I had the problem solved yesterday; I gave instructions for his neck brace, the bath bed was outside the door and so I went to lunch. When I got back nothing had been done and was informed it was too late since that shift had already gone home. We were assured it would be given this morning but that’s what they said last Saturday. Barb is there now since one nurse advised being there at 7 a.m. and I haven’t been getting up as early as she does.

A piece of good news- the wheelchair made its way back to Jon. He drove it down two halls and he parked in the dining room to eat lunch. I had good intentions of letting him feed himself but I was wrong about the chair being able to raise and lower itself to fit under tables. Since I couldn’t get a tray table to fit under the wheels of the chair …once I got it high enough…I gave up and fed Jon myself. The dining room was almost deserted and Jon was facing a beautiful glassed wall looking out on a patio. (He has had several meals where he fed himself entirely on his own.)

The wheelchair was adjusted in a few places and we asked about a tray and a place for an oxygen tank. The therapist is so sure we can get him off oxygen which is great but I think it would be handy to have that option in case he needs it at some future time. As we went down the hall we noticed a cute license on one of the other chairs similar to Jon’s that said “Wilson’s Mercedes.” we’ll have to see what kind of sign Jon wants on his.

The occupational therapist has brought a spongy pad to put under Jon’s dishes and a plate guard to give him something to push against when forking his food. She also found some silverware with fat handles that fit in his hand without being strapped in. She brought some pegs and a board but was interrupted and never made her way back. We’ll try to work with them ourselves.

The physical therapist is quite enthusiastic about getting Jon out of his room. He is doing some shoulder exercises to help give his lungs more room to breathe. I have looked over a report from Fort Wayne several times and completely glossed over the fact that he had fractured at least one shoulder blade in addition to the cracked ribs and blown vertebrae but Matt caught it when I gave him the report to read. One of his goals is to get Jon off of oxygen by strengthening his lungs,stretching his shoulder muscles to give the lungs room to expand and building some upper body strength to prepare for board transfers.

We have two different types of breathing apparatus to encourage deeper breathing but have found the advice of using them every hour to be impossible. I have a chart to help me to remember to exercise his arms, hands, shoulders, legs and feet …and breathing and the best I’ve been able to do in a long time was 2 complete cycles yesterday.

Diet wise Jon is eating regular foods. He finds some meats tough. The speech gal asked how he was doing and he complained about that so she gave him a couple of more exercises--then he got supper which was beef "tips” and noodles. Chunks of the beef had gristle and it was almost impossible to tell which ones did or didn’t. Plain tubular pasta without sauce is rather uninteresting and for some reason he thought the frozen peas were “tough” too. He’s never preferred canned peas so I’m not sure what his problem was. He has seemed rather “down” the last day or two so maybe that was it. They have been giving him Ensure to increase his nutrition intake 3 times a day--although yesterday I was sure it was four, possibly five! At any rate I had really been pushing it all day and we were already two behind when an aide brought another one for his evening snack! Regular meals are still supplemented by tube feedings but that runs only at night.

Again, we are impressed with the therapy programs but continue to be frustrated in the lack of staff. That is compounded by the work ethic of the aides who seem rather nebulous about calling in to say they’re not coming to work or are extremely late. There is also a great turnover in staff as we had noticed at CRSI and the admission director confirmed our observation saying that it was a problem throughout the health care industry. I’m not sure how much 12 hour shifts contribute to that. One compensation here is that they work 3 days and are off 3 days but I’m not sure they are on 12 hour shifts…those would kill me!

Brief update on the rest of the family: Josh had been wrestling and was in a foot hold when he heard several cracking sounds. Everything seemed all right when he walked on it except for some swelling and so he continued on his way for the next week but he did wear an ankle brace. The next weekend he was playing football and he fell on the already injured foot. I saw him come limping up the driveway and he showed me his ankle which looked like someone had inserted a hardboiled egg under the skin on top of his ankle bone. I agreed it needed x-raying so we went off to the hospital. They took pictures and said it was just sprained and gave him a more substantial brace to wear. A couple of days later they called to say that when the x ray was dry it looked like it had a hair line fracture and he should make an appointment with a doctor. He chose a different clinic and they took x rays also. They didn't see a break but decided to treat it as such and he has a walking cast. While Jon was in the hospital lat week at OSU Barb had a high fever and was feeling and looking more miserable than I think I've ever seen her so she went to the doctor and a CAT scan was ordered. We were concerned that she might have the infection Jon had. She was evidently so concerned about that possibility that she was positively joyous to find it was "just diverticulitis." She joins a long line of relatives with that ailment I understand. She had a check-up with her oncologist this last week and everything looks okay. I'm recovering from an ear, nose, throat infection but doing okay otherwise. Everyone else is fine healthwise as far as I know. Josh and Angelique are both celebrating birthdays this month. I cannot believe my youngest grandson will be 20!!!

Must go--Columbus has a really big arts and crafts show and ouor favorite artist from California is here. We are anxious to catch up on news of his health and his family. Hope you are enjoying the same weather we've been having.

On the Move....Again

2009-05-29T22:47:00.004-04:00

I was late getting to the hospital today and got there around noon only to be informed that he was being discharged in four hours and arrangements had been made to send him back to CRSI. Having had mixed feelings about the place and in the mood to go somewhere else his sisters and I decided to check out the Village at Westerville. Barb has a friend staying there and her husband loves it there. Everything seemed to fall in place; they had a room, felt qualified to handle his problems, is known for their therapy programs and so.... at six forty the ambulance arrived and off he went.

He is in a two bed room but has no room mate at the moment. It's a little small but it is our hope that once the chair situation gets resolved he won't be in the room that much. The first suction machine didn't work and Jon's comment was he hoped that wasn't a bad sign of things to come. The TV doesn't make for good group viewing since it is the small, ancient style hospital type which and over the bed and about a two feet from his head. However, there are several lounge areas where he can congregate with a larger group of visitors. He has an interesting air bed that we haven't seen before. It actually pulsates and may eliminate the need for turnings...we're not sure.

The grounds include sunny and shady areas and a patio to encourage going outdoors. It's actually near various eating and shopping areas. The therapy rooms and equipment are reminiscent of Green Springs but the therapy will be more individualized like the last place.

It is our hope that this can be our last move before going to Dodd.

And It's One Step Back

2009-05-28T22:48:00.008-04:00

We have noticed that Jon has had bouts of sweating even though his arms and legs might be cold. One day his head was as cold as ice but he was drenched in sweat. Sunday he slept most of the day and was running a fever. He was back to saying strange things. He wanted to know where a ball was going to hit him. When asked "what ball" he said "the cannonball."

I noticed on Monday that he was asking for suctioning almost every two hours, especially after being turned. Before I left that night they said they would get a sputum sample and do blood work on Tuesday. When I arrived they added x-rays of his chest and stomach. Later that morning they announced the doctor wanted to send him to the hospital and did I have a preference. I prefer to keep as much with one hospital as possible so it was back to OSU and their emergency room. He had more blood draws, and another set of x-rays. Finally, 6 hours later, they had a room set up and he was admitted. The x-rays of the chest showed a mucous plug--he hasn't had one of those since February-- pneumonia and a high white blood count. They have also started him on flagel again so his c diff is also back.

Wednesday they had a top of the line air bed that does most of the turning for him at the click of a button (today however, it didn't seem to be working.) They have started a new set of treatments and seem to have taken care of the mucous plug (actually there were two) without a broncoscopy. He has a new gadget for practicing deep breathing called an Acapella but nicknamed a pickle for its shape. He has to breathe in slowly (something very hard for him to do) holding the "pickle" in his mouth and then blow out through it so that it makes a fluttering sound. He is getting better at it and we need to do it more often.

The bedsore has not been connected to a wound vac but it was clean enough that it didn't need to be debride. They prefer to treat without the vac at the moment and as long as it is looking good and healing we won't complain. Sometimes a change-up in therapy is what is needed to speed things along.

They have arrived at somewhat of a compromise on the feeding. For the last two days the only nutrition was what he actually ate. Today they added a can of Ensure to breakfast and at noon they gave him a high protein-calorie fruit drink. Tonight they said they were going to connect him to the feeding tube at night only to supplement his meals.

Meanwhile the fancy chair stays at CRSI and if we don't return another one will have to be sent to the new facility. I was hoping to be able to work in the x-rays needed for the neurosurgeon and perhaps a visit there at the hospital and save a trip to his office in June but do to the reasons for his hospitalization they prefer to wait until June.

Marj

Look Out World, Here he comes!

2009-05-24T00:39:00.003-04:00

What a busy, exciting, hectic week it has been for Jon! Thursday the e-stim (electrical stimulation) on his legs and Friday his trial chair came and what a doozy it is! Three inches of special padding on the seat to relieve pressure on the derriere. In addition to reclining, the whole chair can go up and down so he can sit comfortably at any table or view things at different heights. I didn’t get a chance to see him operate it for the first time but did wise crack that for the first few days he probably needed a horn--it has one! He has driven it down the hall to the nurses station and back.This means that he can go downstairs to therapy and will be getting dressed daily for at least part of the day. The gowns have been driving us absolutely buggy!!! Getting into it is quite a procedure since he needs to have his turtle shell back brace and binders on his chest before he can sit upright. Then he needs to be hoisted up into the chair.

Yesterday afternoon they shut off the electricity in Jon’s room so they could install a special power strip in his room. . . just not enough outlets for all the electrical stuff he and his room mate need and 3 cords were stretching across the pathway. As if that wasn’t enough if respiratory needed to suction him they had to unplug one of the other items. And occasionally they have forgotten to replug what they took out. This staff is really overloaded. No one had been down as of the time I left on Friday to rearrange all the plugs so 3 cords were still crossing between the end of the bed and the wall.

We had been spoiled by the last speech therapist. He was assigned to Michelle and unless he missed a day and was making it up on the weekend she was the only therapist he saw. So far this week I think he’s seen 3 different gals popping in the door saying they were there for speech therapy.

I don't know if the rest of you are having trouble reaching this site or not but I certainly am. I have been trying to post for most of the evening. If I hadn't had trouble sleeping I would not be here at this time of day (excuse me, night) and writing you! The message has been written and sitting on my desktop I just couldn't get onto the site to log in and paste it.

Thanks for stopping by. . . hope you have a safe weekend.

Another Physical Therapy First

2009-05-22T09:23:00.009-04:00

Physical therapy has been using a tilt table with Jon for the last several weeks to get him into a standing position. This allows blood vessels to constrict and relax in different ways than when he is lying down or sitting up. He has been upright about ten minutes at a time. They have also been working with balancing while sitting on the edge of the bed. Wednesday he sat without any support for almost a minute. They have been teaching him how to tilt his head forward and backward to keep from falling in those directions. Thursday they tried electrical stimulation on the muscles of his legs. Carol was so excited to see how the muscles actually moved. Josh (the physical therapist) explained that that means the nerve passages are still intact so in addition to developing some muscle mass the ability to move his legs would be possible if the spinal cord develops new pathways or regains some function in that area. I'll settle for developing muscle mass at this point!

Jon has been doing some arm and hand exercises on his own. He was so pleased to show me how high he could raise his arm when I came back on Tuesday that I thought I was going to get hit on the chin! He has found a way to use one thumb to stretch the other thumb which is great since they seem to be really tight. Occupational therapy has been working with pegs about the size of the control knob on some of the scooters I've seen at the hospital. He has to pick them up and place them in the holes on a board.

Jon's health seems to be a little better. I've been supplementing his medication with some DanActive probiotic drinks to help all those struggling good bacteria in his digestive system (which does seem to be acting better.) I've also been encouraging him to eat as much of his meal as possible. He has gained some weight--enough that they have cut his food formula for tube feedings from 1.7 calories per mL to 1.5. I have also been encouraging him to feed himself. Yesterday I cut up his hot dog in bite size pieces and left him on his own which startled both Carol and him. I had been irritated with his refusal to eat any of the bun--there is something about the texture of bread that is really bothering him. Anyway, Carol reported that the first few bites were a little shaky but the rest went pretty well. He ate all the hot dog, some of the baked beans and half of the potato salad--neither of which are on his list of favorites. I have been trying to encourage the rethinking of food. . . some of it is pleasurable and some is not but all of it is fuel and you need fuel whether you like it or not! In an effort to keep on my good side in this respect he even tried pickled beets which are definitely not on his dietary list of favorites--but is on mine!

Bedsore seems to be getting better--new one developing near it. Nursing staff says too much sitting upright I say too many pillows under the knees in an effort to ward off sores on his feet. We have special boots for that which they don't use in the day time....unless someone forgets to take them off in the morning (night crew puts them on at bedtime.) We asked that the TV be put on the wall mount instead of the night stand so that it is possible to lay him back further and still view it. They did that rather promptly. We also are lowering the entire bed which makes viewing easier.

Got to run..this is Barb's last day with kids and she really wanted me to stop by and see them. I think I've already missed the chance to see Jon on the tilt board. Hope you have a good and safe holiday weekend.

New development

2009-05-17T22:09:00.003-04:00

Jon's former roommate is now next door. His wife(the roommates) came over to see how Jon was doing. She talked to him for a few minutes and her grandson came over to see where she was. The grandkids came over and were talking to Jon. The granddaughter asked Jon what happened and he told her he was in a motorcycle accident. The grandson was interested in all the machinery that Jon is hooked up to and was checking it all out. Jon enjoyed their visit.

Jon was in a good mood when I got there today. Dad went up after church and fed him lunch so I took time to mow my grass. It was knee high. I had to mow each row twice. When I finally got to see Jon asked me about my "jungle". He asked "Did you hear Tarzan yelling in your yard" and did the Tarzan yell. "Did he say Me Tarzan, you Jane?" It was really nice to laugh with Jon.

Jon has the start of another bed sore on his bottom. Opposite side of first one. It started out as just a red spot and they put a "second skin" on it. Today we noticed that the bandage was soiled and starting to come off. When they changed the bandage, we saw that the skin was broken. It's not much but it is the start of a new sore. Once the skin breaks it can develop quickly. The night tech agreed to turn Jon early as much as he can throughout the night. Please pray that the sore does not get bigger. Jon asked "Why don't they have a wound vac on it?" I told him that it wasn't big enough for a wound vac. That would not be pretty, one on each side.

The trial wheel chair has not shown up yet. I wanted to get him in a wheel chair and outside as it was so nice today but he didn't want to and it didn't work out with turning and eating schedules. I hope to get him outside sometime. I think that being out in the sun would so nice. Hopefully the weather will cooperate.

Thank you for checking in and keep praying.

The Good, the Bad, and the Ugly

2009-05-14T22:58:00.006-04:00

I wanted to write over the week-end about Jon’s visit by Abby, the therapy dog, but somehow I just did some grocery shopping, attended church and puttered around the house. This is probably the third week that Abby has visited Jon’s room. I put the bed down as low as possible so Jon could see her well. He petted her and she decided to get a little closer and put her front paws up on the bed so she could lick his hands. I think Jon had forgotten her past visits as he said afterwards that he was a little concerned that she might bite. This from a dog that seems one of the gentlest I’ve ever seen--and therapy dogs have to pass rigorous tests before they’re allowed to visit. Her owner is a lady who I'm guessing is in her late seventies and I think she said this is her second therapy dog. I have a picture on my cell phone and hopefully I can get Angelique to put it up for me…there is a limit to my digital skills.

Jon has been enjoying his time with the speech therapist. She is the first to work with Jon on cognitive skills and he will miss her. Tomorrow is her last day in Columbus and she moves on to another assignment; one closer to Virginia where her family and friends are. She was on a 13 week assignment here and will spend another 13 weeks at her next assignment. Occupational therapy has Jon working with plastic pegs so that he will be able to maneuver his "boat" with a joystick. I finally found a way to soak his fingernails in warm sudsy water and gave him a very amateurish manicure. Mostly I cleaned the gunk out from under his nails and trimmed both hands. Usually he gets pretty tired by the time one hand is done but this time I could get both sets done. We finally received word from the neurologist saying our appointment was set for June 18 so we will finally get some idea about when the neck brace will come off and whether he will still need some kind of stiff foamy collar. You might pray for a coolish spring and early summer as he spends a lot of time sweating as it is. I can almost wring the moisture out of the pads of the brace when I change them for fresh ones. Another set is being ordered thank goodness.

As the day wore on I noticed that Jon was requiring more suctioning than normal and at first I wrote it off as the result of resuming milk to his menus. But as I was shaving him (electric razor) I noticed that that he was shivering--at that stage just seemed like a vibration. A little later he was downright shaking and I asked the nurse to take his temperature. 102.1--this from a guy whose normal temp runs around 97.8! We really got some action. An x-ray was ordered for his chest, blood was drawn for cultures, urine was taken for testing and he was given Tylenol and deprocote.

When we came in on Wednesday we were given the results from the x-ray which showed he has pneumonia in his lower lobe of the right lung. They also had an x ray taken of his stomach which had become quite swollen. The poor staff was kept busy with changes and they speculated that he was allergic to the medicine they started the previous evening. It was pretty apparent though based on the smell and the flow that he again has c diff, an infection of the bowels. He had just finished the last of the treatment 3 days ago and it is back again. This is unofficial but they’ve started administering flagel again which is what they used the last time. He slept most of the day. They stopped the feeding tube in the hope that that would slow things down, which it did and he wasn’t hungry at all at lunch or supper. He did eat some jello and sherbert.

Today he’s feeling much better. People who haven’t seen him for a week commented on how good he looks. The respiratory therapist felt he was in better spirits Monday and Tuesday than he had been for a while. He dictated a really nice note to Michelle, (speech therapist) great guy that he is. He even signed it and in cursive to boot! He was on the tilt board again today. Was in a standing position for 10 minutes which allowed the occupational therapist a chance to work his arms in all the positions that rails on a bed don’t allow.

I’m still working on the staff. Their idea of cleanliness is far different than mine and heaven knows I’m not nearly as picky as a lot of people I know! And they crossed the line way before they left soiled linens on the register for the air conditioning! I’ll continue to work on it…

So much for the ugly! I’ll take this across the street so I can post it while Jon is napping. Thanks for checking in.

Well I tried to post there but the internet connection wouldn't cooperate. I'm having difficulty with both Barb's computer and mine. On her computer I can read my mail but I can't reply, forward or compose. On my computer I can get the listings in the inbox but none of the messages show up!

Thanks again for checking in..g'night.

New Room!!

2009-05-05T22:46:00.005-04:00

Sorry for posting so late at night.

Sunday Mom, Jon and I played 3 handed turn up euchre. Jon prefers bid euchre but I'm not good at bidding so he agreed to turn-up. Before the accident it was hard to get him to play with us at home. He was always playing so much with his friends. It's nice to have him play with us. We don't keep a written score but Jon seems to keep track on his own.

Jon is not a yogurt fan but Mom has talked him into trying the Probiotic yogurt to help with his bowels. He tolerated it but didn't like it. He has not wanted to eat anything that he doesn't like the taste of. Mom has been trying to get him to understand that he needs to eat for nutrition and not just taste if we are going to get the bedsore healed. I am proud of him as he is eating more even if he doesn't like it. Yesterday (Monday) his bowels were thicker than before (sorry if that is tmi) which is a good thing. Solid food seems to be helping. It's been liquid in, liquid out for so long.

Yesterday (Monday) Jon was moved to a new room. He was originally in a room intended for a ventilator. They had 2 people coming that needed a vent so he was moved out. He stayed on the same floor. His new roommate came at 11:00pm!!! There was quite the confusion. While Jon is not on a vent, he has 7 different plugs and there were spots for only 6 things to be plugged in. That is with taping a cord on the floor and having 2 stretched and taped over the air conditioning unit. That means that either his IV or his suction machine is unplugged at a time. Carol just informed me that the new neighbor is sharing a plug with Jon. The neighbor's feeding tube (which is battery backup) needed to be charged so one of Jon's machines, which is also battery backup, was unplugged. This is going to be very interesting and hopefully not harmful.

I had a class tonight so I didn't see him tonight. Mom and Carol came down this afternoon. They played 3 handed turn-up euchre. They only played 6 hands before Jon was done. Mom won 3, Jon won 2 and Carol 1. He did not eat very well today. He likes his salads. Apparently he demanded to have a salad for breakfast!!!! They forgot one at dinner and had to have one sent up. He eats it first. Carol told Mom about a liquid Probiotic. They picked some up and he did better drinking the 3 ounces instead of eating the 4 ounces. While 4 ounces isn't a lot, he eats smaller bites. He was having some trouble breathing today.

Jon is due to have a shower at midnight tonight. It has been a week since his last shower. He isn't too enthused about having one at midnight. He was measured for his hand braces (as they lost his original ones) today. Tomorrow he is being measured for a special power wheel chair. It will be a "Tilt in space" which means that he can relieve his pressure by tilting back. He will also have a special cushion to help with the bed sore.

Reflections

2009-05-01T23:15:00.000-04:00

It’s a week like this that makes me realize how impatient I can be sometimes. Last Friday I reported Jon’s hand splints missing and left a note for the occupational therapist that we would need new ones. I arrived late in the afternoon on Monday and she said we’d wait for a few days to see if they turn up as that does happen sometimes. Wednesday she said that she’d get her rep on Monday to measure Jon for new hand splints. Yesterday she measured him to see if any of the splints she has on hand would do until the new ones arrived. She had one for one hand and had to order one for the other…and the rep won’t be here until Tuesday. On Wednesday if all goes as planned a factory rep will come and measure Jon for a wheelchair which I gather will have lots of bells and whistles. He’ll need one that will have a pressure release, tilts backward, is a little higher on the back to support his head, etc. It will be more like a scooter than a wheelchair and will take 2-3 months to arrive. Dodd Hall was going to order one but we weren’t there long enough. We’ve been here at CRSI for a full month now. It doesn’t seem possible!

Towards the middle of last week Jon was started on still another round of antibiotics. This time for a urinary tract infection. They ran some other tests on his stool since we’ve been having a running battle with diarrhea. At that time the test came back negative for any problems but this week they were positive for something called c diff. This is when you’ve had so many antibiotics that they’ve started attacking good bacteria in addition to the “germy” ones. The balance of good and bad bacteria becomes out of sync. Ironically the way to fix the problem is with still another kind of antibiotic! We’re going to add yogurt to his diet and see if that doesn’t speed the healing process.

The wound doctor changed his mind about how well the VAC had been doing on Jon’s bedsore. It is about the same size in diameter but has gone even deeper. Without the clear bandage that the VAC dressing has it has been difficult to keep the gauze dressing clean and I was positive the doctor would not be pleased. My biggest regret is that we’ve lost two weeks in the healing process.

A reflection on Jon’s progress shows that while it has been slow going the progress is significant. Originally the doctors in Fort Wayne thought Jon would never be off a ventilator. He has had his trach capped for 4 weeks now, long enough for the therapist to ask if we’d thought about removing the trach. While we’re delighted that that is a possibility we’re uncomfortable remembering the times when out of the blue he has a huge drop in oxygen saturation and he’s had to go back on the ventilator…sometimes for just a few days but he’d have to have a new tracheotomy if this happened again.

Jon has once again worked his way up to real food and has learned to use a spoon to eat some foods--he’s working on the fork but I have visions of his stabbing the roof of his mouth with the tongs. He can’t quite get the fork up high enough yet. This week he has been very shaky and the food falls often enough that he gets discouraged. The occupational therapist and I have noticed that his arms very in flexibility. Some days his left arm moves more easily than the right and other days it’s reversed. She says this is quite common and to be expected.

It has been just a little over 6 months since the accident and while the progress has seemed extremely slow it is significant and on the whole better than the doctors predicted in Fort Wayne. It would be nice if these other health problems would dwindle out but in reality I’m afraid they are here for good. (There must have been a different way to teach me patience and convince Jon to give up smoking anything and drinking!)

New Pictures & How to Post a Comment

2009-04-27T17:53:00.004-04:00

Hey everyone- be sure to check out the new pictures on the right. Uncle J really looks like he enjoys the tilt board! Also- I have heard word that there are a few people who would like to comment on posts, but aren't sure how. Below each post there is the word "comments" and a number- the number tells how many comments have been posted for that particular posting. To post your own comment, click on the word "comments". A new window should appear, here you should see any comments that have been left and also a see a text box that has "Leave your comments" at the top. Click in this text box and type your comment. Below the box, it says "Choose an identity", if you don't have a Google account, simply check the field for "Name/URL" and a field will appear for you to type your name. You can also check "Anonymous", but if you do, be sure to put your name with your comments in the "Leave your comment" section so that we can tell Uncle J who all has been stopping by and sending messages his way. When finished, click the orange "Publish your comments" bar at the bottom. I hope this is helpful, but if not- get in touch with me (any one of the family can give you my info) and I can see if I can help you through it. Thanks again for checking in!

A Quiet Day

2009-04-26T22:45:00.002-04:00

Friday Jon was up on the tilt board again. He really enjoys it. Mom took pictures of him on it using her cell phone which Angelique will post tomorow. Saturday and Sunday were pretty relaxing. His room gets the morning sun and got pretty hot. Sunday around one o'clock, he was sweating alot. I was wiping off the sweat every 10-15 minutes. After an hour of wiping off the sweat, I went out and found the nurse. She took his temp and it was 99.1. Since Jon runs low to start with that is more like 100.1 to us. As the afternoon went on and the room cooled down, he stopped sweating. He did some breathing and arm exercises. All in all he was really quiet today. I asked him if he was okay, that he was really quiet and he said he was fine.

If the weather is nice this week, in the 70's and not so humid, I would like to take him outside for a while. The 80's are just too hot and it was humid. It is hard for me with asthma to breath when it's humid and I didn't want to chance it with his breathing. Then with his temp being up and sweating already, I didn't ask to take him out.

That's all for now. Thanks for checking in and keep up the prayers.

Look at me...I'm standing! Kinda...

2009-04-23T23:23:00.002-04:00

I had a post all ready to go late last week in which I sounded really discouraged. Jon just didn’t seem to have any energy. He had been sweating a lot last week but not running a fever, that is one that is considered normal fever for others, but he’s usually a degree below normal. Many of the people coming in the room complained of it being on the cool side since we had turned on the air conditioning. During the week-end he started to run a higher temperature but not near the 101 degrees needed for treatment. They did run tests for urinary tract and bowel infections but everything came back negative. He’s needed a little more suctioning and I’m running my normal congestion “thingy” where I can never decide if I have a cold or it’s allergies kicking in. At this time of year it could well be allergies but we’re both complaining of a sore throat in the morning.

He’s been very excited with his new physical therapy regime. He’s strapped to a tilt board which allows him to be raised to a standing position. As you can imagine he is absolutely thrilled with the feeling of standing! He likes it to go as high as possible which the therapist said scares her when she's on it because she thinks she's going to fall over. Occupational therapy came in today to see how well he was feeding himself. She talked him into trying to eat his salad with a fork. Up to now we’ve encouraged him to eat things like mashed potatoes and meatloaf with a spoon which is a little easier to control and then we feed him his salad. Carol has been here this week and she has noticed that his bites are getting a little larger so he is developing more confidence in himself (Barb noticed his bites started getting bigger over last weekend but forgot to say something to anyone). They are ordering some kind of extension that will allow him to pick up a cup so he can get drinks for himself. It seems he drives the staff crazy with his constant requests for a drink of water. While Barb was there tonight she noticed that he is asking for more water than usual so tonight maybe more interesting than normal for night time staff.

The speech therapist has been spending a good half hour working with him on cognitive skills. She may have him make a new word of an old one by rearranging all the letters, making “ate” into “eat” for example. Repeating a series of words and listening to paragraphs and answering questions on the information given are some other exercises. Yesterday she managed to extend the session to 45 minutes and I think she’s going for at least that today. I’m using that time to type this post. (The therapist is really interesting. She is a traveling speech therapist and is hired on a 13 week basis and then goes on to a different job in a different town. This is her second move and she’s finding it hard to leave the new friends she has made.--I would, too.)

We’re still being frustrated in having to constantly remind the aides of the turnings but there are times when time gets away from us and then we notice it is well over 2 hours since the last turn. The wound doctor took him off the VAC because he didn’t like how the wound was progressing. We think it is getting bigger and don’t like the progress that silvadene and bactroban is making. It's harder to keep the dressing clean since it is not vacuum sealed. It had already been changed twice today and when Barb left tonight it had to be changed again due to the awkward place it is located.

I’ve made up a chart to remind me of all the different exercises he should be doing at various times throughout the day. It also helps to pass the time. We didn’t finish The Kite Runner and I started Holes but while he says he likes the sound of my voice it does a better job in putting him to sleep. The book cart came around today and he picked another western but I only got through a page and a half of the last western he thought he wanted to hear and he was asleep again--some excitement!!

His favorite past time when Carol is here is going through her list of his friend’s phone numbers and goes through it talking to as many who are home….and up and around. He really enjoys talking to his buddies and it lifts his spirits. It’s too bad he can’t manage the phone in his room yet. We’ve found a way to tuck our cell phone in his neck brace which allows us to be able to walk out of the room and let him talk to his heart’s content. The phone disconnects when the recipient hangs up so we don’t have to worry about being billed for dead air time. You can call home to get my cell phone number if you want to call him sometime. I’m here throughout the week and Barb and her dad are here a lot in the evenings and over the week-end.

We are getting somewhere in reducing the medications he is taking. They took him off a rather powerful one and I’m anxious to see how much difference, if any, it makes in his mood. I so long for some spark in his eyes and some hint of determination. This is the second set of staff that have asked who wants him to go to Dodd Hall more, Jon or us… so it’s not just us in sensing a lack of enthusiasm. Warmer weather is coming and we can get him outside. We’re hoping the change of scenery and the tilt board will get him rolling.

Thanks for checking in.