September 1-15, 2000

Friday, September 1, 2000 - day 54
Jake was a little teary eyed when I got there today. He said he's homesick. He wants to come home. He misses his room; his friends; his job; his school... everything. Hopefully, he will be coming home soon, but it will be a long long time before he sees his old bedroom. His new bedroom will be on the first floor. Terri has the difficult chore of moving Jake's things. It is a terrible invasion of his privacy, and I don't envy Terri one bit for having to do it. We need to move 6 rooms around to make a room for Jake. After the first 2 rooms get empty, it should go pretty smoothly.
He talked for a while, then he cheered up. Jake ate a little more than he did yesterday. Now we are getting somewhere! He ate half a bbq sandwich (minus the bun), all the broth from the soup (left the noodles) and half the sauce dish full of watermelon.
He ate in his room because the table he uses in the multi-purpose room was no where to be seen. His chair is very high, so he needs a high table. So we used the one in his room. OT said he would look for it.
Jake balked at some of the food, but I think he was trying to bait me again. He no sooner took a couple bites of the bbq and declared that he was sick of it (with a big grin). I helped him scoop up the stuff because it was runny, and you know what? That kid is stronger than I am. When he didn't want the meat, he pulled his arm away, and I could not move it! Of course, I made a big deal about it. We "fought" for a while. (got some exercise out of him :) )
He is trying hard to do his "job", which is to get well enough, and strong enough, to come home. He is up much earlier than before (at least awake); the staff have been told (by Terri) that she wants him up earlier than before. They would attempt to wake him; he would say no, so they would just go away. They would ask him if he wanted a shower; he would say no, so they would go away. Now Jake has been told (by Terri) that he is not to say no to anyone anymore. It is his job to get better as soon as he can. The nurses remind him of that a lot. I think they enjoy it. :) His nurses, and the aides, are great people. But they are busy people, and do not have the time to coax Jake into doing things when he balks.
The skin on Jake's hands are very dry, and odorous. Terri puts them under running water, scrubs them, and they still smell. Has anyone else had this problem? Is it the braces? Once the braces are gone (I hope he doesn't have them forever) will the odor abate? How did you handle this? When you look at Jake's hands, it looks like he has white plastic gloves on.
Another hot hot day. It feels like south Texas! :) Don't get me wrong. I love south Texas. The people, the trees, the land, the ocean, everything... except the dew point. :) Jake, Terri and I had some great times in the Rio Grande Valley. And we plan on visiting again. We've had a minor set back, so it'll take a little longer. Maybe tomorrow I'll remind Jake of that. It might cheer him up. Give him something to look forward to.
Saturday, September 2, 2000 - day 55
Today when I got there Jake was still in bed! Seems he "forgot" that he must request to be transferred to his chair on the weekends. He said tomorrow he would remember.
I brought him some chicken soup. He had that and some yogurt and a half pint of chocolate milk for lunch. Unfortunately, that is not many calories, but it sure filled him up. Notice he ate two dairy products. Hopefully, this will not mean suctioning. He hasn't been suctioned in a couple days. I was not about to remind him about the dairy products. He enjoyed the chocolate milk. The yogurt was a surprise, and he gulped down half the carton. Probably 300 calories max for lunch. Tomorrow we ordered chocolate milk for breakfast. He hates breakfast but said maybe the milk would be good. I suspect he "hates" breakfast because the nurse or aide must feed him, and he is a pokey eater. Also he never really ate breakfast before the accident.
The nurse asked if she could remove the collar for a while. Jake does not like the collar off. He argued with her. I didn't know that he is supposed to have it off more than on. Preferably, off - all the time. He likes the security the collar gives him, especially in regards to the trach. RN wanted it off for 2 hours; she and Jake compromised on one hour off, one hour on. Guess Jake and I are going to have another little talk.
Jake had company this afternoon, so I was sent to the cafeteria. :) I don't mind that at all. I love it when he gets company. Then we were on our way to take a walk, and Pastor Borgman came in. That brightened my day measurably.
I did range of motion exercises with Jake today, but he had trouble directing me. OT said Jake must pay attention to his exercises so he can direct other people to help him. I did ok with the arms, but I had trouble with the legs. Even though he is only 118# (probably less by now) his legs are dead weight and hard to raise. Then on top of that I was afraid I would do something wrong. Guess I'll need a little direction with the legs.

Sunday, September 3, 2000 - day 56
Jake was in the manual chair when I got there. First time I'd seen him in it.  He does pretty well in the manual chair going forward and backward. Still has trouble turning, and going over bumps.

Then he was transferred to his power chair. Lunch time. I pushed his table to the multi-purpose room so he could (not) eat with the other patients. Waste of my time since I could not find his arm brace for eating. In the end that didn't matter because he didn't eat (much). His throat hurt; he wasn't sitting right; he had nausea; he was cold; if he could think of it, he complained about it. I am so afraid that they are going to go back to tube feedings. Yesterday he consumed 25% of his calculated daily caloric intake which means he probably had about 450-500 calories.

It wasn't any better for dinner tonight. Terri reported he ate about 1/4 of the meat. Same complaints.

The doctor thinks he may be depressed; that is the reason for the sleeplessness, the dysphagia, the nausea. He wants us to consider medication; he mentioned Paxil. I asked about St John's Wort and he said he would not discount it. If we brought it in, the pharmacist would evaluate it. (that impressed me, but did not surprise me-I like this doctor). He said medication might help Jake short term, and is usually discontinued after approximately 6 months.

Depression would make a lot of sense, since Jake is usually very gregarious; cheerful. If he becomes moody, it only lasts minutes. And of course I can understand the reason for the depression.

After the non-lunch, we watched Vikings-Bears for a while, then Terri came. She actually talked Jake into letting her cut his hair. So without further ado, we went to one of the therapy rooms, before he could change his mind. Terri transferred Jake for the first time. Jake said she did ok, but bumped his trach. She did quite well with the reverse transfer, which was from the lower therapy table to the higher chair.


Jake after haircut

Terri was not able to convince Jake to let her shave him. Maybe tomorrow. :)

 

The doctor came in while Terri was cutting Jake's hair. He was delighted that Jake had the collar off. As mentioned previously, they want the collar off all the time; Jake wants it on all the time.

Today was a very long, tiring day. I admit I was more than a little frustrated by Jake's lack of eating, and constant complaints. It wears a person down. There was never any peace. It was constant. And I have no reason to believe that tomorrow will be any different.

Monday, September 4, 2000 - day 57
When I got there today Jake was in his chair, watching TV. It is unusual for him to be watching TV now. A few months ago it was one of his favorite pastimes.

I told him I was tired today and that if he didn't want to eat, well that would be fine with me. I didn't have the energy to coax, threaten and bribe him to eat. He said, "oh I want to eat" and proceeded to eat about 140 calories worth of food. This was his first food of the day since he doesn't believe in breakfast.

I am resigned to the fact that he will be back on tube feeding.


Jake without his collar. Smiling too, not sticking out his tongue. :)

We went down to the main lobby for a change of scenery and we met our neighbors coming to visit Jake. It was so nice to visit with them. We all had a pleasant hour.

I left shortly after Terri arrived. Traffic very heavy today. I'm not happy in heavy traffic.

Tuesday, September 5, 2000 - day 58
Today Jake was in the manual chair for his (non)lunch. He drank 1/3 of his half-pint carton of chocolate milk. That was his lunch. He again did not eat breakfast. I have decided that we will stop making selections on his menu. It's a waste of time since he doesn't eat anything anyways. He might as well not eat what they send, instead of not eating something he orders.
I spent the rest of the hour trying to hold him erect. He kept falling forward in his chair. I didn't know what to do, and he could not direct me. The aide tried to helped by propping pillows on his lap, but he could not breathe in a forward position. So I tilted the chair back, and held it there with Jake's neck against my body for support.
Near the end of the hour a helpful person told me to slide his butt forward in the chair so gravity would tilt him back. I had tried that earlier but I didn't do it far enough. Jake kept telling me (actually whispering to me, he can't talk well in that position) that OT had done something to his chair to sit him up to eat. I could not figure out what she had done. The back did not look like it could be adjusted. Jake was wrong, she just slid his body back in the chair. He must pay more attention to what his needs are so he can direct people with his care.
He asked that he be given the Paxil. So I guess that will start tonight.
I hope the tube feedings will start again tonight too. At our request he has been getting a multi-vitamin, almost since he was transferred to the SCI unit. So he is getting some vitamins. But he is running on empty. He wonders why he can't hold his head up, or his body erect. I told him that any moving thing needs fuel unless it depends on gravity. Jake is adamant that the tube feedings will not resume; yet he does nothing to prevent it.
56 days! We need your prayers more than ever now. Thank you.
Wednesday, September 6, 2000 - day 59
Jake was in his manual chair again today. That was good news.
He was very sore last night from being in the manual chair yesterday. His neck hurt from holding it up. His shoulders hurt from pushing the chair. He knows that the more he is in the chair, the less it will hurt. I told him that if he would eat something it would be easier to hold his head up. Yes I know I'm beating a dead horse, but I can't stop nagging.
He ate zip for lunch again. Two sips of chocolate milk.
They started tube feeding again last night, thank goodness. I was so worried about that. When you go without food long enough, your body parts stop working. He has a very strong family history of cardiac problems, from arrhythmias to fatal heart attacks, all with onsets at an early age, 50 yrs old or so. Also the Paxil may cause heart arrhythmia. It's enough to make a grandmother worry.
Jake has discovered that if he leans forward in his manual chair his nausea abates. Also he can work up his secretions easier; less suctioning. He was very happy when he realized that. It looks weird to see him in that position. You want to rush and help him. It's hard to hold a conversation when he is sitting like that too. The only problem is he can get down there by himself, but as yet cannot push himself back up. I (again) mentioned the fact that if he had fuel in him that would probably be a piece of cake.
He asked to be suctioned while I was there. You could tell he needed it. Every breath gurgled. I had helped him a little (with assisted cough) but he couldn't get rid of it all. Well, the aide came in about 3 minutes, then talked to Jake as she was getting her gloves on, and opening the packet. Then a nurse came in and we all talked for about another 3 minutes. He stopped gurgling! We couldn't believe it. They had all heard his breathing. And then it got better. Needless to say, he didn't get suctioned. Maybe this is the beginning of the end of the trach.
The thrush is gone. There is no sign of it any more. But his throat is still very painful. Deep down in his throat. Terri came to the conclusion that he must have been injured during one of the many suctionings. It was inevitable that this would happen sooner or later. Jake claims that the reason he won't eat is because it is so painful to swallow.
I asked Jake if he would request to be weighed again. He's only been weighed about 3X since he's been there. He was 118# last weigh-in. He was close to 150# at time of accident.
Well, today went better than yesterday so I guess we are on our way up again.
Thursday, September 7, 2000 - day 60
Terri went in to the hospital early this a.m. to learn some of Jake's cares. PT told her that she had transferred Jake correctly the day of the haircut.
She stayed during lunch. Jake ate a little for her. He fed himself some yogurt, which surprised me. Not only because it was food intake, but because he used a spoon and actually kept the yogurt on the spoon till it got into his mouth. He would not let us hold the yogurt container, he did it himself. A couple of times his fingers hit the yogurt instead of the spoon, but he just grinned. Terri said "go on, lick your fingers", and he dead-panned "no, I don't know where those fingers have been".
We have been told he needs a "swivel" spoon; it moves with gravity so the food doesn't spill. I think that the swivel spoon would not work for Jake yet because he still sort of takes aim and pushes it into his mouth. The swivel spoon would probably bump against his lips and tip.
The Paxil was started two days ago; we are told it could take up to 2 weeks for it to start working. Jake says "when the Paxil starts working I'll start getting better". I don't like to hear that, but the Pastor says that I shouldn't discourage him from saying that. He has to have hope, and right now his hope is that a drug will lift him out of depression. OK. I'll go along for now.
Terri left at 1:00 and I left shortly thereafter. He will have an aide feed him tonight because Terri is not coming back. She and Dave are going to look for a new front door so Jake's chair can fit through it. Jake was not happy with that news (Terri not coming back) but he seemed resigned to it.
When I left he was in the OT room. I had printed out all of his web pages and a lot of his emails, and put them into a 3-ring binder for him. This binder has a back rest so it stands, and can be viewed without holding it. OT is going to show Jake how he can turn the pages. He has seen very few of his pages, so hopefully he will have an enjoyable afternoon. I hope the first two weeks do not alarm him. He remembers very little of that terrible time.
Another (baby) step forward. Baby, giant - I don't care, I'll take whatever God will give us.
Friday, September 8, 2000 - day 61
Jake was asleep in bed when I got there at 11:45 a.m. He said PT was in at 10:15 or so to get him up, then PT decided he was early, left and promised to come back "in 15 minutes"; he didn't come back. I told Jake that even though PT didn't come back as promised, he still needed to call someone to get him up. Ultimately, it is his responsibility to get up, not PT's. I told him that in the end, it will be his fault that he was still in bed at noon, and I was right. PT came back and was upset that Jake was still in bed. Did I call that one or not?
I'm beginning to understand the rules. Don't rock the boat; depend on yourself; it's always the patients' fault.
When Jake was finally in his manual chair, he spent the rest of his (non) lunch hour bent forward. He discovered that he can blow his nose quite well in that position. When he is sitting erect it is a futile gesture. It's a diaphragm thing.
I didn't even bother opening his milk; he ate nothing. We talked. (he talked into his pillow; I talked to the top of his head). I don't think anything was accomplished.
He doesn't eat. He refuses to get up in the a.m., preferring his daily cares to be done while he is sleeping, if possible. He makes excuses for everything from sitting up in bed (I'm too far down in the bed, my feet will get caught) to using the manual chair (I get dizzy) to swallowing his meds (I'll choke) to eating (my throat hurts) to taking a shower (you might get water in my trach). I truly believe that if we would let him, he would lay in bed all day and night, head slightly elevated.
I told Jake that the only person who could help him is himself, and since that didn't seem forthcoming, he was not going to get stronger, or better. He said "I feel like I've let you down", and I surprised him by answering, "yes, you have, a little". See, I know he can do this. He is strong. He is tenacious; oh boy, can he be tenacious. But he doesn't want to fight. He doesn't want to do anything; he doesn't want to learn how to help him self.
OT came at 1:00 to take Jake to therapy. Jake said that he would work real hard this afternoon. Well, he also promises, every day, that "tomorrow" he will get up for his daily cares; he'll be in his chair when I get there; he'll eat better; he'll do this; he'll do that... "tomorrow"
Saturday, September 9, 2000 - day 62
The person in Jake's bed today was not the same person as yesterday. He had a shower this a.m. and was ready to be transferred to his power chair when I got there. Terri transferred him, with the nurse watching. RN said Terri did a good job. Terri left shortly thereafter since she had been there all morning, learning more daily cares.
Since we have learned that Jake gets very cold when he showers, we nipped it in the bud. He was covered with blankets and a towel around his head until he warmed up. That paid off as he was not shivering all day. Some times he gets so cold his teeth start chattering.
Jake ate a little bit for me. Actually I didn't want him to eat too much since he has been "fasting" for the past 3-4 days. We decided to start slowly. His stomach became "queasy" after lunch so he was given Zofran. Actually my stomach became queasy also, but about an hour later. I think it was the watermelon. He had one bite; I couldn't resist. I ate the other 3 bites. (2nd time I have eaten something from his tray).
He was in OT for over an hour this afternoon. I have pics but don't have the time to edit them. Maybe tomorrow. He worked his arms; then showed me how he can play a game on the computer.
All this time he had the collar off. Also he slept with it off last night. After OT he asked if I would put the collar back on so he could rest (his head).
We watched college football for a while. Notre Dame/Nebraska. Very good game. Except, all of a sudden I could hear Jake snoring. He said he was "resting his eyes". :)
I left about 3:30; he was expecting a friend to visit. Kris and Mark were going to visit at dinner time so they could help him eat.
It was a beautiful day, but I don't like roller coasters anymore.
Sunday, September 10, 2000 - day 63
Today was a long long day, for both Jake and me. The only thing that is encouraging is that he is trying to help himself now. I can see that he is really trying. I hope things get better for him soon. We are all wearing out.
Monday, September 11, 2000 - day 64
I didn't visit Jake today. Southeastern Wisconsin is being inundated with t-storms, hail and heavy rains. I am not a good bad-weather driver. Had an accident in '93 and have been skittish of bad weather ever since. So with a very guilty feeling, I asked Terri to call Jake and tell him he'd be dining alone today.
Terri left me a note last night stating that they think Jake may have another UTI. Would partially explain some of the difficulties from yesterday.
Terri and I have determined that one month ago we were farther ahead than we are right now. We just keep going backwards.
I don't understand how people without faith in God can survive something like this. Thank you for your prayers.
Tuesday, September 12, 2000 - day 65
Jake was in bed when I got there. He said they let him sleep this a.m. because he's running a fever (102). They said he wouldn't get up because he was "too tired".
He ate 7 wax bean pieces and 1/8th carton of yogurt. Said it made his stomach queasy. (just like a broken record). I told him anything he put in his stomach would make the acids start up, because it is so empty and he has to start somewhere. He said "tomorrow". (another broken record).
He was started on Cipro for the UTI. I'm giving him yogurt to possibly ward off a yeast infection. I don't know if it will work, but it can't hurt.
We keep sliding backward.
Wednesday, September 13, 2000 - day 66
Jake is still running a fever, between 101 and 103. They started an IV today to prevent dehydration. He has been given Cipro for the UTI. They did blood cultures and the first one came back positive. Hopefully the Cipro will fight that too. The sensitivities have not come back yet.
I came at 11:30. He opened his eyes and said "I'm sorry, grandma", then fell asleep again. I didn't stay long. He was sleeping comfortably and I did not want to disturb him. Hopefully tonight he will be awake for a while, at least long enough to eat something for Terri, preferably some yogurt.
After that second episode of adverse reaction to a drug from the Compazine family, Terri issued a request that she be notified of any change in Jake's medications. Today she got a call... they wanted to give him some meds with a Compazine base! Actually the same drug that he was given when he had the 2nd reaction.
I'm not clear on positive blood cultures. They always take two of them. When the first one came back as positive I said, "does that mean he has sepsis?" and the RN said that the second one wasn't back yet. So I guess that means that both of them must come back as positive? I don't know. I just know that Jake is very sick.
Thursday, September 14, 2000 - day 67
I didn't visit Jake today. RN reports that he will probably stay in bed all day. So I decided to work a long shift today so I don't have to work on Saturday.
He still has a fever. He was a little more alert for Terri last night, but still nodded quite a lot. He ate a few spoonfuls of yogurt for her. :)
Lately he has not been digesting his tube feedings but RN reported that today it is better. Whew! What do you fall back on when even that is not working?
Jake's nausea is a big problem, especially since he can't take the drug that will help him (because of adverse reactions). Terri investigated, and found out that there is no other drug available to help Jake.
Terri has taken a few days off from work. The living room carpet is now rolled up, Terri's sewing room (dining room) carpet is next. (hard to move a wheel chair on carpeting). About 7 years ago Terri took over the dining room and made it her sewing room. The living room furniture is now stacked on the front porch, and we are moving Terri's sewing stuff into the living room. We aren't going to have a living room any more. But Jake will have a bedroom (Terri's old sewing room-dining room) - even if it is right next to the kitchen. He won't have much privacy but hopefully this will be temporary.
Next, I (and my computer) am moving upstairs to a vacant bedroom so (hopefully) we can make my computer room into a bathroom for Jake.
Eventually we would like to build on in the back so Jake can have a little more privacy. We would like to build him a big bedroom-recreation room
Friday, September 15, 2000 - day 68
Terrible day today. As I start writing this (4:00 p.m.) Jake is in surgery. I left when he was on his way to the OR. Probably going to be a very long day for Terri. I didn't stay for the surgery; my long day starts at 3:00 a.m.
Last night Jake again spiked a fever 0f 103.2. They gave him Tylenol and put ice packs on him. They took more blood. The last culture was negative, so one negative and one positive. I guess they just assume the first one was contaminated? I don't know. His UTI is a staph infection.
Then the RN noticed a very red swollen sore on the front of his neck where the incision scar is. They did an MRI and discovered a "ledge" in his throat. The transcribed report is not on his chart yet so I can't be more specific. When Jake talks, he gurgles - sort of like he had marbles in his throat. It's been that way for many days now, keeps getting worst.
Starting late last night they put Jake on NPO (nothing by mouth). He could not eat or drink anything. Late this a.m. he had another swallow study.
Jake has an esophageal leakage. He has a huge, long space/fistula which is full of fluid next to his esophagus which runs up and down (the fistula) and also goes all the way to his skin on the front of his neck by the tracheostomy. ENT (ears, nose, throat) doc said this could be critical because it is very close to the internal fixation device in his neck. She says she will culture the fluid during surgery; good chance it's infected.
This is why he has had the sore throat for the past 4 weeks. This is why he has so much phlegm and needs multiple suctionings. This is why he has slowly been going down hill; not getting any better, just weaker and weaker. This is why he couldn't/wouldn't eat. I know what you are thinking. Yes, I feel very guilty about getting upset and frustrated with him. And he will get my apology as soon as he is capable of thinking beyond his immense pain and discomfort. (and fear - he was terrified about this surgery)
Possible reasons for the leakage - he has lost a lot of weight (don't understand that one); his throat tissue is wearing away; from coughing and vomiting? Don't really have answers that I can understand.
The surgery he is having right now is ENT. They are placing a drain into the fistula. The bad news is that Jake must be NPO until his esophagus heals. 2 weeks minimum to 8 weeks! Now this means water, food, everything. After two weeks if a swallow test doesn't show signs of healing the drain will be considered a failure. I honestly can't remember what the ENT doc said would be the next step if that fails. (maybe it's a psych thing and I really don't want to remember).
They will increase his tube feeding so that he can still perform therapy. I was very worried about that. We were told that tube feeding can actually help someone gain weight if given continuously. That was reassuring. (he has lost so much weight that his hospital ID bracelet fell off his wrist). He will have IV hydration also. The worst part is the "no-drinking". He likes his water. The doc also explained to us why Jake was having trouble digesting his tube feeding lately, when he was doing ok at first. I'll check with Terri later to find out what the explanation was. I can't remember. :)
IV feeding (TPN-total parental nutrition) was mentioned but the doc is not in favor of this. He prefers tube feeding.
The doc talked to us about the Reglan. That is the drug that Jake has trouble with - it's an anti-nausea/digestive drug. He wants to prescribe it for Jake again but cut the dosage way down; claims a lower dosage will probably help Jake. If reaction develops, it can be reversed quickly. Terri knows that there is no other drug available to help Jake - she has discussed this with her pharmacist, so I think she may agree to this.
Even though this was a bad day, if we have finally found the reason for Jake's misery, we are on our way up (again).
Jake is in God's hands. Please pray for him. Please pray for everyone on the SCI floor.
Terri just called. (6:00 p.m.) Jake in recovery room. Doc says a lot of pus was removed. It will be a minimum of 1 month before he may eat or drink anything - even ice chips will cause seepage into the fistula. The good (?) news is that the doc says his need for water should not be as urgent as before because most of his problem was the junk in the fistula. - the constant coughing, the throwing up, the suctioning.
Oh boy, is this going to be a long month!