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....