August 23-31, 2000

Wednesday, August 23, 2000 - day 45
Today Jake had another queasy stomach. It's off and on. He ate breakfast this a.m., got up early (by his standards :-) ), had a shower. Had therapy in a.m. Still complained of nausea. Didn't eat any lunch for me. He was afraid it would come back up. It looked like such a good lunch. Their sandwiches are excellent. But Jake left it untouched.
Everything seems to be going ok for Jake, the therapies, his attitude, his willingness to help himself. But he can't shake this upset tummy. Hopefully, the doctor will be able to help him.
One of Jake's therapies is a wrist action. He showed it to me today. If you hold your hand out like you are going to shake someone's hand, then extend your wrist outward. He can do that with both hands! He practices every day. He cannot (yet) do this if his hand is facing down. Gravity is his enemy in this case. He says "yet" because he is determined to be able to do this. :) Put your hand on a table, palm down. Now raise your hand up, keeping your forearm on the table. That is a goal for Jake.
Pastor Pickhardt visited this noon while Jake was trying very hard to fight his nausea. The whole day brightened. We had a very nice talk. After Pastor left, both Jake and I felt so much better. His visit made both our days 100% better. In fact, I wouldn't be surprised if this uplifting feeling lasted a few days. :)
Thank you for your prayers. Would you please add a small prayer for someone who has been in my prayers for a long time. His name is Jerry, and early yesterday morning, at St Luke's in Milwaukee, he received a new heart. God at work again. :)
Thursday, August 24, 2000 - day 46
Today was a hard day for Jake. Today school started; all his friends went back to school. Contrary to all the jokes about it, most kids look forward to returning to school. Jake is no exception.
He still has the nausea, but meds help for a while. He was given Zofran. Then he felt good enough to eat some mandarin oranges and 3 bites of chicken. No caffeine though; it makes his stomach worse.
Jake worked on a computer for a while in OT today. He was introduced to a software voice-activated program called "Dragon". His voice is still so low that he had trouble with it. But hopefully his normal voice will return with the removal of that trach tube; and strengthening his lungs. I guess I don't know that for sure. I'll have to ask about his voice.
I forgot to mention that two nights ago Jake had trouble with his trach. The cord broke. So they had to replace it. While they were attempting to do this, Jake coughed. His trach tube popped out. He was not a happy camper because then it had to be put back in. :(
Long day... short post. Thank you for your prayers.
Friday, August 25, 2000 - day 47
Today when I got there, about noon, they were transferring Jake back to his bed from a gurney. He had just been to x-ray for an abdomen series to determine why he is so sick. He is constantly nauseated, and he vomited in the a.m. He does not have a fever, thank goodness.
Any movement makes his stomach queasy. They gave him Zofran at 12:30; at 3:30, when I finally left, it hadn't helped him yet. He is not eating, but he is drinking a lot of water, and a small amount of white soda. The water makes his stomach lurch, but so far this afternoon he's been keeping it down. His mouth is constantly dry; hence his need for the water. This is good; otherwise they would probably be giving him an IV to ward off dehydration. He doesn't need any more needles in him!
He says his abdomen feels bloated/distended. They removed a fair amount of tube feeding from his stomach last night. He immediately felt better. Then the nurse was going to put it back into his stomach, but Jake asked her not to.
He spent a very restless night. Had a lot of stomach pain and dry heaves. Very uncomfortable.
I hope we can get to the bottom of this problem soon, and help him. Also determine how we can avoid this in the future. Those few days before he started getting sick were wonderful. He was eating well, doing his therapies, over the weekend he was roaming the hospital with Terri and me. Then on Wednesday, the nausea started. And it just kept getting worse and worse. Until today, when he can't even move, without the nausea. Actually he has the nausea without moving. Moving makes it worse.
Today Jake had a visit from a young man named Russell. Russell had a diving accident in 1995, and also is a C5-6. It was reassuring to see what Russell can do. He was in a power chair, but he usually uses a manual one. He just moved into his own apartment, and he is enrolled, full time, at MATC. Russell said he'd visit again next Friday. Hopefully, Jake will be feeling better.
I'm sorry that I've been so slow answering your emails. There are not enough hours in my day. I have said that for years, but now I truly know what that feels like. Tomorrow I don't have to go to work; first day off in 13 days (this was a voluntary thing-we are severely understaffed right now). Hopefully, I can catch up on a few things at home.
I just called Jake (4:45 p.m.) and he still does not feel any better, but the x-rays did not show any obstruction. Yes! He was given a laxative, and hopefully, will start to feel better soon. His menu for tonight includes catfish. Jake loves catfish! But I'm afraid it will stay on his plate tonight, just like the sandwich did at lunch time. I can't blame him. It's bad enough he has no appetite, but no one can eat when they are nauseated.
Thank you for your prayers. Please pray for Jerry too. I didn't hear anything today, but yesterday he was doing ok, they were about to start anti-rejection drugs for the heart transplant he had on Tuesday.
Saturday, August 26, 2000 - day 48
We have decided to request a daily copy of all the drugs Jake gets. Then we can be on top of any problems/side effects/reactions that he might get. We found out that he was started on a new sleeping med Tuesday night, trazadone (less common side effects include nausea/vomiting/constipation and muscle tremors/spasms). They also started a new respiratory medicine, theophylline(less common side effects include nausea/vomiting) on Tuesday. On Wednesday, the nausea and muscle spasms started. Thursday, more nausea, and muscle spasms. On Friday the vomiting started. They did an abdominal series to try to determine the reason for Jake's nausea and vomiting. They found a large amount of stool in his colon. He was constipated.
One of the extremely frustrating parts of all this is that one hospital employee expressed surprise that Jake's emesis was actually witnessed by an RN. My assumption is that the employee felt that Jake was "faking" to get out of therapy. But I don't like to assume things. I could be wrong. I like to think I give people the benefit of the doubt.
Jake has been told that if he refuses PT/OT it will be documented that he is non-compliant. Now if I were Jake, and if I were vindictive, I would go to therapy, and barf all over everything. But I am not Jake, and I am not vindictive. I am also not experiencing extreme nausea when I move; it's easy to say you would do something if you were in their shoes; but unless you have walked in their shoes, it's best to keep your opinions to yourself. Now I can apply that little bit of wisdom to myself, and hopefully, others will do the same.
Do I sound hostile? Do I sound frustrated? Friday I watched as my grandson continued to be in extreme misery. He vomited (witnessed by an RN, so it's legit). If he moved an inch, he experienced extreme nausea. He had many muscle tremors/spasms. I watched as his legs, arms and abdomen constantly twitched. He did not know why this was happening to him. He was not "faking it" to get out of therapy.
Jake was very tired; being that he did not get much sleep the night before because of the nausea. He was very tired both physically and emotionally. He does not understand why this keeps happening to him; why every time he seems to be going up the rollercoaster, it takes a sudden, steep fall.
Before this nausea started he was into his 4th or 5th day of continued improvements in his eating. He was doing well in the therapies he was involved in. He was complying with their requests. Jake wants to come home. He does not enjoy his present situation.
I think more than frustration I feel guilt. I should have suspected a drug from the start, but I didn't. I still am not certain that it was that drug, but hey, read the "less common side-effects". It's a good guess that the drug was part or all of his problem.
**NOTE: I wrote the above words early this a.m., before I visited Jake. I debated about whether or not to post it; I was venting more than anything else, but I decided to let it stand as written. I haven't changed my feelings about it, and I'm sick and tired of trying not to offend anyone. Jake, and his family, have just as many rights as the next person. Just because he is 17 yrs does not mean he will automatically try to "get out of something". He is having a few more medical problems than the average SCI patient, but he is trying to fight them. Sometimes it seems that we are fighting them alone, with no support. I know this is not true, but it only takes one or two people with a bad attitude to spoil it for everyone. I'm going to start being a squeaky wheel. (hey, Lisa)
Today was a good day for Jake. This was not the same person as yesterday! Only a kid could bounce back like that. Smiling, cheerful, joking with the nurses. He was in his chair when I got there. He was feeling 100% better than yesterday. He started eating lunch and company came. He immediately brightened up even more. We both spent a very enjoyable couple hours with friends.
Slight nausea after lunch, but it went away. He still is getting that drug, but he says he does not want it any more. I think, but here again, I'm not a pharmacist, that he could probably keep taking the drug if he also took a stool softener. But, believe it or not, he doesn't want that drug any more because of the spasms more than the nausea and constipation. I told him that the drug may not be causing the spasms, but he thinks it is. He really is having many more spasms than before, but it may be from healing, or something else. Can anyone else relate to this? In his power chair today, after going over a very small bump (a doorway) his whole body experienced spasms. Head to toe; I witnessed it. I have never witnessed a convulsion, but I imagine it would be similar. ?? It was only 3-5 seconds. I appreciate all feedback, even though I'm pretty slow with the returns lately. :)
Jake doubled his breathing incentive treatment with me today since yesterday was a bust. (little does he know that if he can double the treatment today, he can double it tomorrow :) ). He also had some PT later today. He was going there when I left. Terri and Dave were there, and Jake wanted to show Dave what he could do.
Today was wonderful. Jake didn't have to ask me if we were having a good day, he knew we were. The rollercoaster is at the top again. Maybe it will stay there for a while. That would be nice, but I'm not counting on it. :)
Sunday, August 27, 2000 - day 49
Here is the note that greeted me this morning when I got up.

Mom
Jake had another reaction. The new drug they gave him was in the same family of the Compazine. The allergic reaction was the same as the Compazine and happened while he was eating his dinner... needless to say, he didn't eat much.
He ended up vomiting again after he was given meds to help calm him down (from the adverse reaction to the Compazine)
Love, Terri

***NOTE: Excerpt from August 18, 2000, day 40:
"Jake had an allergic reaction to the Compazine he was given yesterday. His jaw locked, and his joints stiffened. Now we have two drugs on the list of no-no's, Compazine and percocet."

When nursing staff was informed that Jake's joints were again locking up, and that it probably was a reaction from the drug, the response was "well, I really doubt that". Then it was acknowledged that the drug that was given was a form of Compazine.
Before this latest fiasco, he had PT.


Jake is sitting by himself! PT is only holding his hands.

Today Jake ate minimal for me. Again complaining of nausea. Then he went down to the cafeteria with me so I could eat lunch. Yes, I could have planned that better, but I was rather upset today and wasn't thinking about my lunch until I saw Jake's. Then I got hungry. :)
He did his breathing incentive for me before we went down. I put his chair slightly farther back than yesterday, and he did much better, hitting 750 points most of the time.
After that he requested more therapy in the gym since Wednesday, Thursday and Friday were busts. OT complied. He did 10 minutes on the bicycle machine, 6 at low speed and 4 at a harder level. Very good. :)


Then OT did stretching exercises with Jake's shoulders, arms and wrists. Terri was finally able to see how he can move his wrists.

I left shortly thereafter; Jake was pooped, and I was starting to wilt too. :)
Here's hoping the rest of his day went well. Thank you for your prayers. We sure need them.
I had composed a different page this morning, and sent it to one of my daughters to view. Today at the hospital she gently reminded me that her mother had taught her to listen to both sides of the story before coming to any conclusions, and never never to judge people... leave that to God. She is right.
Monday, August 28, 2000 - day 50
Here is the note that greeted me this morning when I got up.

Mom
I didn't get home until after 9:00 again, but it was because we had a GOOD night. We watched a movie in the multi-purpose room with Nick and a couple others. Jake seemed so content just sitting there with me I couldn't bear to tell him I had to go.
After the movie the nurse transferred him to his bed. I talked to her about the meds, and made sure they didn't give him that new sleeping pill.
When I left, Jake was talking on the phone with a friend.

love, Terri
Oh, what a difference one day makes!
Today Jake was at a computer when I arrived. He had stretching exercises in a.m. He ate a normal lunch ( seems to be normal for him - a 2 year old would starve on his diet). He was smiling, eating without protest. Very social with other people in the dining room.
After lunch Oconomowoc school people were coming to discuss his schooling.
We briefly discussed the reason why he stopped the exercise bicycle yesterday. It was because he became fatigued, not from pain. That is good. He knows that he can lengthen endurance with exercise.
Short day for me. I'm still lagging from the horrible last 4 days (actually Wed, Thurs, Fri and Sat - Sunday was ok)
Thank you for your prayers. There are a whole bunch of wonderful people on that unit, so if you mention the SCI unit at Froedtert, I'm sure God will know who you mean. :)
Tuesday, August 29, 2000 - day 51
Today Jake fed himself. Hopefully, from now on that is the way it will be. He ate some roast beef, green beans and grapes. Tomorrow I'll see if I can get some pics of him eating. It was a fun hour. He was in a good mood. He joked about accidentally stabbing himself with the fork; with getting the fork stuck in his mouth. Both those things can happen. If Jake does not get his arm high enough the curve of the fork can make it stick to the top of his mouth. He asked me to bring him a piece of pizza tomorrow. (cheese and all)
Jake has a yeast infection in his throat from the antibiotics he was given for the UTI. His throat is sore, but aside from that he feels pretty good.
The nurse announced that the order had been given for the removal of his collar. Jake was stunned; then indecisive. He likes the protection of the collar for his trach, and for transfers. (it's also handy for scratching his chin). The funny part is that just yesterday Dr Rao visited Jake, and told him that it wasn't time yet. We will have to investigate this further.
This a.m. he practiced writing. He used to have a very neat (as in cool, nice-looking, etc) hand printing. I liked it very much. In fact, I wanted to make a font out of his hand printing. His first attempts today were not very legible, but just knowing he has the capability is exciting.
I left on a happy note. Again he wanted me to stay. OT gently reminded him that I leave right after lunch. He accepted that.
Terri and Jake have discovered the cause of a lot of his nausea. It is mental stress. Yesterday Jake was fine until the supper tray arrived. Then he started experiencing nausea. He and Terri talked about it. He knows he should eat, but it is very difficult for him.
After the school meeting they discussed when his tutoring should begin. Immediately the nausea started again. He wants to learn, but is maxed out on other minor things right now; like learning how to eat; how to self-cath himself; how to write; how to dress himself, you know, all those minor things we take for granted.
He can't sleep at night. He worries about everything. When he finally comes home: What if he sleeps through his alarm and doesn't wake up to cath himself? What if he gets thirsty in the middle of the night? What if he can't be left alone during the day? Will that be a burden on Terri and me? (it has already been documented that if Jake goes home with a Foley, a feeding tube, and a trach tube, that "he will be a burden on his family".
He worries about his future. How will he be able to make a living for himself? Will he ever have a family? Will he be able to eventually live alone? Where will he sleep when he finally comes home? (we are working on that - biggest problem is no bathroom on 1st floor)
It is criminal that a 17 yr old has to have those types of worries.
Terri asked that the psychologist visit Jake every day for the time being. Jake felt much better after talking with him, and the doctor agrees that this is a good idea.
I think this is a big step in the right direction. Our biggest problem so far been trying to figure out why Jake keeps having all these setbacks. The drug interactions, the mental stress, the nausea, etc.
Wednesday, August 30, 2000 - day 52
Today I brought in a piece of pizza, as Jake had requested. Good thing I did, it was the first question on his lips, "did you bring the pizza?" I should have bought a pizza that we are familiar with, but I tried a new kind. It was rather spicy, and had way too much cheese on it, even for me. He had a little of it. Then ate from his tray. Fed himself some cantaloupe.


Jake is feeding himself.
Notice his collar is off. Notice the chin growth.
Everyone on the SCI unit wants him to shave, and get a haircut.
What do you think?

I think he was almost convinced to shave and get a haircut until one of the patients, a young woman, said "you are only 17! I thought you were 26-27 yrs old". :) :(
He is allowed to have the collar off whenever he wishes, but for now, he prefers to have it on most of the time. Especially for transfers.
The fork is attached to his left hand brace. He lifts his arm from the shoulder, then in toward his face. Many times he has misjudged and pierced his nose, lip, etc. Actually, it's rather funny, and he is the one who laughs first. Gets a big grin on his face. Today I put some green beans on his fork, then put the camera to my face. The stinker pretended to put the beans in his mouth, even pretended to chew. He then tried to shake them off onto the floor but that didn't work. I started to help him spear some fruit, and discovered the beans.
Yesterday late afternoon, early evening Jake needed to be suctioned about 6 times. They transferred him to his bed early because he was tired. He has the yeast infection in his throat. He has seasonal allergies, and that season is starting again. It could have been any of those reasons, or something we haven't figured out yet. Never the less, he needed the suctioning. I wonder if we are going to have to suction him when he comes home. We help him with his breathing exercises every day, but he doesn't seem to be getting any stronger.
Jake's nightly tube feedings have again been discontinued. They are hoping that he will get hungry. (he doesn't feel hunger - even Russell, new friend from last Friday says he still doesn't feel hunger and his injury was 5 years ago.)
The team meeting was yesterday afternoon. Terri said it went well. Jake's target discharge date is 3 weeks, which would mean Sept 19th.
Talk about stress. He is still getting suctioned. He still has the trach. He still has the gastrostomy. The Foley, well, I would prefer that he keep that, at least for now. I learned how to empty that.
We haven't had time to move stuff around our downstairs so we can prepare a room for him, not to mention a bathroom of some sort. Well, the ramp will come first. I guess Terri has finally figured out where to put it. Our lot is very narrow, and our house fills up most of the lot.
Thursday, August 31, 2000 - day 53
Jake had a shower this a.m. When he wheeled into his room at noon he was freezing. I put a sweatshirt on him. Now we will know that right after a shower he must have extra clothing on him for a while so his body can warm up again.
He ate his whole cup of soup, probably about 6-8 ounces. He took a bite of hot dog, but that didn't settle right. He got sick of the soup after 6-8 spoons, so we sort of had to get nose to nose for a minute till he understood that it was too bad that he was sick of the taste, he was going to eat it. :) In the process, I managed to break the arm of the chair. Not really break it, it just came loose. So then he had to proceed to tell everyone that I broke his chair. (with a grin) (but he ate the soup - all of it)
He is off tube feeding for now; all of his calories are counted. Terri seems to think that elimination of the tube feedings is an important first goal. So we must persuade him to eat. He did not eat any breakfast; Terri is going to talk to him about breakfast (again).
Nurse noticed a rash under his arm today. So now we'll have to figure that one out. I know it can't be heat rash. (joke)
His throat is very painful from the infection. (thrush) The soup went down fairly easy; I think because it was warm. The soda hurt a bit, but he drank it. (room temp)
Jake and I discussed attitude again. He is quick to voice his complaints; he can be very theatrical about his pain/discomfort. I told him I realize that he is just 17 yrs, but he must learn to control some of his reactions since these things are a turn-off to most people.
Short day for Jake and me, but a good one.
Thank you for your prayers. Thank you for praying for Jerry. He (and his new heart) is out of the intensive care unit. Yes!
When I left Jake today he was on his way to OT and the computer.