A Visit from Liam

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

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

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?

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!

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

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

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!!!

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

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.

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

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

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 :)

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

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!

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

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!

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

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

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

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

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

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

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.

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

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.