October 1-15, 2000

Jake's (lack of) Progress - Monday, October 2, 2000 - day 85
Jake is spiking temps again. His nausea is worse, not better. Today it will be 48 hours since he's been off the first 3 antibiotics. If his nausea doesn't abate today the doc will consult with a gastroenterologist.
 
Tuesday, October 3, 2000 - day 86
Today was a good day! For a while there, I didn't think I'd ever say that again. Every time things looked good, or we had a fairly decent day, boom, the next minute we were plunging to the bottom in that darn roller coaster again.
Jake's nausea is not as severe as yesterday. He's had no temp spikes for 24 hours. He was planning on getting up this afternoon, and going to therapy. He told me that when I visit on Thursday we could go outside for a while. He told me to bring my camera.
The GI docs have prescribed Prevacid. For two days Jake will get both Zofran and Prevacid (because it takes 2 days for the Prevacid to work), then the Zofran will be d/c. If that doesn't work they will do a scope procedure to diagnosis any problems.
For many days Dr Waring has told Jake that if he would sit up his nausea would probably lessen. Well today Jake told Dr Waring that he is feeling a little better... "the nausea isn't as bad when I sit up". Dr Waring is a good sport; I like his sense of humor. He sort of grinned and said "gee, maybe I'm right about something". Dr Waring said that Jake could have an ulcer; it's possible because of the mental stress of the trauma.
In my opinion, 80% of Jake's GI problems is mental stress. That doesn't mean they are not real. He could very well be brewing an ulcer, or gastritis. In fact, I'd be surprised if his GI tract was completely normal. He is a very sensitive boy. He worries about everything. He worries about Terri and me. About the house. About school. About his future. About... everything.
Our big job is to make Jake relax, and just concentrate on TODAY. And getting well enough to come home. I told Jake to put "tomorrow" in God's hands.
They are still removing a ton of junk from his drain site. I can't believe it. It will be 3 weeks this Friday, and 5 antibiotics later (he's still on 2 of them). The rest of his nausea is probably from that drainage - some of it must be seeping into his stomach. At least it is dripping into a full stomach. He is still on continuous tube-feeding, and tolerating it very well. I asked if he could be weighed once a week - he has to be gaining weight now.
I am actually starting to hope that maybe, just maybe, we (Jake too) will be able to attend a family get-together at the end of this month. At the beginning of September it looked very doubtful. Since we are into October now, I know I missed a family wedding that was either one or two weeks ago. For the past few months, all the days and weeks sort of run together on us.
Jake has a new PT person. He is delighted with this new person; Jake says the new PT is a lot like him (personality-wise). I said "oh-no"! Fun to joke with him again. :)
Oh, I wonder what tomorrow will bring?
Thursday, October 5, 2000 - day 88

Notice that there is no string hanging from his neck. The trach is gone! This time I'm pretty sure it's for good. The stinker can even maneuver his hand up to cover the hole so he can talk. I knew nothing so trivial as a hole in his throat would stop Jake from talking.
The nausea is way down. The new med is helping, and hopefully he is learning to control his stress.
He weighs 111 pounds! Jake announced that today while new PT person was in the room. PT looked at Jake's skin and bones and said "uh, is that good?" I said, well, he was 104.4 pounds a while ago. PT smiled and said "that is very good !"
I can understand why Jake likes the new PT person. PT is very good with Jake, and Jake reacts accordingly. Of course, he is finally feeling better, and that makes a huge difference.
Jake had them raise the speed on his power chair. #1 is a" fast walk, almost run" for me, #4 is a "leisurely stroll" for me. Now Jake and a fellow patient have races in the hallway. :)
Jake is sitting up more in his power chair, and in his bed. I asked him about the manual chair and he said "soon, but not yet". I said "ok".
I think both Terri and I are anticipating his discharge from the hospital in about two weeks. We probably won't have the ramp yet, but we are willing to carry him into the house. We want him home.
Now we must work double hard to get the dining room and computer room ready for his bedroom and bathroom. Of course, the bathroom won't be ready for quite some time, but I still have to move my computer stuff so he has some privacy. That's the agenda for the next couple days.
Saturday, October 7, 2000 - day 90
I was able to watch Jake in PT today. He is doing very well. PT put weights on Jake's wrists, about 5# each arm; Jake had to lock his elbows and raise his arms, using his shoulder muscles. At first he went slow, and rested a long time in-between raises. But right before he quit, he did 10 reps, one right after another.
Then he wanted to go on a machine. Wraps with a ring attached are placed on his wrists. Then the ring is hooked over an "s" hook that is on the machine. I think today the weights were set at 31.5#. He needs to control the bar both coming down and going back up.

I inserted this photo so you could see his "picc" line. It's the white thing on his right upper arm.

I did my first transfer today. I tried with the board, but immediately decided that I could do better without it. After 2 transfers, PT transferred me; showed me just how easy it is. Then I again transferred Jake, and it went very well.
I left Jake around 2:00. He wanted to go back to bed for a while, but RN nixed that. It did not make Jake happy. He said he's bored. There is nothing to do, so he might as well sleep. Doesn't want to watch tv. If he sleeps in his chair he misses his pressure releases. I reminded him that the Wisconsin game started at 2:30, so he perked up a bit at that. (I bet he's not too happy right now - it's half time and they are NOT winning).
Jake complained of nausea again, but said it was tolerable. Then he said he was hungry. So RN put him back on tube feeding as I was leaving.
Jake and I plan on watching the Packers beat the Lions tomorrow at noon. That will give Terri and I all morning to continue preparing for Jake's homecoming.
Thank you for your prayers. Please add a small prayer for Jake's mom. Terri is wearing out. Too much to plan... to move... to prepare; not enough hours in the day. She used to work about 60-70 hours a week (she has a full time job, plus her own business); a piece of cake to all of her activities now.
Tuesday, October 10, 2000 - day 93
Jake and I went outside for a while today. This time I remembered to empty his Foley before we left. :)
It was a beautiful day. Sunny, windy, about 55 degrees. I love autumn. We stayed out about 20 minutes, then he wanted to go back in so he could be hooked up to tube feeding. He was hungry! He said he gets weighed again today. The doc wrote an order that he's to be weighed once a week.
Jake was told the infection (in his throat) is gone. He will still be on antibiotics for a number of weeks. I guess I want to know when (how) the hole will close up. They are still packing it 2X a day.
He still has nausea, but has discovered that if the RN pushes some white soda into his gastrostomy tube that it helps the nausea. Now that's something the average 17 yr old doesn't know. :)
He hasn't been back to the manual chair yet, but is slowly sitting more erect in the power chair. I've been told that eventually he should be able to sit up straight by himself; also be able to lean forward and push himself back upright.
Today he practiced putting on a t-shirt. He can get the arms ok, with a lot of help, but cannot yet handle putting it over his head (he has no triceps). When he is able to lean forward, he should be able to maneuver his head into the shirt (while in bed), then sit up and pull the shirt down. At least, that's how OT explained it.
I am anxious for him to do more on the mats in PT. Stretching the arms so he can hold himself up. He has not done that for about 1 month. It's going to be like starting all over again.
Short visit, short post. I must continue with my moving.
Friday, October 13, 2000 - day 96
Jake was fighting nausea yesterday. At noon PT transferred him to his chair, in spite of Jake's protests. He wanted to lay in bed, on his side because then the nausea is not as intense. His voice rattles a little when he speaks. They gave him an expectorant, so he was coughing a lot. Doc says that is common when a trach is pulled. (I didn't ask him why it took 1 week for this to start. The trach was pulled last Thursday, and Jake's been ok until today). He insisted on laying all the way back in his chair, but I slowly raised it every 5 minutes. PT stated he would be back at 1:00 and I wanted Jake ready for him.
Slowly, after assisted coughs, he started feeling a little better. I think that the cough med might be the reason for his nausea. Also, Jake mentioned that the last part of his tube feeding was not digested. Hopefully, that is a temporary thing.
He announced that he was up to 113 and 1/4 pounds. So he's gained almost 10#. Way to go, Jake!
I called Jake later yesterday afternoon and he said he was feeling better. His nausea was gone, he didn't mention the coughing, but he sounded much better . Of course, that immediately made my day 100% better. He mentioned that in PT he had been on the mat; he worked with weights too. That was good news.
Wonder where the roller coaster will be tomorrow?
Saturday, October 14, 2000 - day 97
Jake was scheduled to come home the week of October 23rd. At least that was the news at the team meeting this week. Today an ortho doc (a resident) told Jake that he'd probably have surgery next week. He told a very apprehensive 17 yr old boy - who promptly became nauseated again. Jake was alone when the doc told him this. Terri and I were home. Now Jake may look like he's 26 yrs old, but he's a very scared, 17 yr old boy. Resident wrote in Jake's chart "will remove anterior plate next week. Screw loosening likely secondary to drainage".
The hole in Jake's throat is not healing so he must stay "npo" (nothing by mouth) for another 4 weeks. If, at that time, it still isn't healed, we were told that they will do more surgery, consisting of a graft from his abdomen to close the hole. I hope that if they remove the plate, they will also do the graft at the same time. But that is too logical...
They cannot say how big the hole is. They compare it to a balloon. When the balloon is not inflated a hole is small, but stretched, the hole becomes larger.
He still hasn't been in his manual chair since the throat surgery. That means it's a month. He will not be able to use his power chair outside the hospital because 1-we have no way of getting it home, and 2-we have no way of getting it into our house. That pickle is heavy!
We don't have a ramp yet, but that is coming soon. I don't know if we'll have it by the time Jake comes home, but then again, if he has more surgery next week, his homecoming will probably be delayed.
Sunday, October 15, 2000 - day 98
Jake is having surgery on Tuesday. The resident discussed it with Terri and Jake today. He went into great detail about how serious this surgery is because it involves the spinal cord; and that it might set Jake back again. (can you believe it?) He mentioned a possible trach tube insertion again. This is the same sensitive resident who yesterday announced to Jake that he would have surgery this coming week. Jake was alone when this happened; both Terri and I were home. This was completely unexpected and immediately threw Jake into panic. Today was no better.
Before this wonderful resident made his appearance Jake and I had a great time. On the way to the elevator he stopped and visited with some of the patients. He joked with me. We went outside to enjoy the Wisconsin autumn weather. Partly sunny, breezy and about 55 degrees. We stayed outside longer than we ever had before. Jake enjoyed it very much. No nausea today, no tummy ache. That is until Doctor run-at-the-mouth dropped by. When I called Terri a few minutes ago Jake was back in bed; very quiet.
We have tried to get Jake to live for today, and not worry about what will happen tomorrow. It almost worked today.
The surgery involves removing one of the plates in his neck. The screw is coming loose. There is no plan to close the drainage hole in his neck at this time. (don't know why - means another surgery in a month)