January 2001

Sunday, January 7
One little wrinkle in his clothing!
Yesterday Jake wasn't feeling up to par. The day started out fine, but after he was transferred to his chair, he just sort of wilted. Said his stomach was upset; his forehead was cold, clammy and he was constantly breaking a sweat on his forehead and scalp - no where else.
Terri gave him lunch which fixed the stomach upset. We checked the Foley for kinks; Terri flushed it (new as of the night before). His neck wound was ok. Ulcer on back almost completely healed. We did not know what else to do. Finally Terri discovered a wrinkle in his shirt that he was leaning against. She fixed it and the sweating stopped!
I really need this explained to me - I don't understand. My wild guess is that nerve endings on his back detected something amiss (unusual pressure) and sent messages to the brain, but got mixed up at his injury site and short-circuited his system. The brain didn't know how to react so sent a "may-day" out via his forehead/scalp. (I told you it was wild). :)
It ended well. Jake felt great after that - he and Terri went outside for about an hour. We learned another lesson on care-giving for an sci person. We had been warned about wrinkles in clothing - we always make sure he is ok. But I guess we missed today, and this was our first experience with wrinkled clothing.
One of the things we had looked forward to during Jake's week-long stay in the hospital was that he would get a shower. Well, that never materialized since the surgery was cut short. We don't have shower facilities for him yet. That is probably years away. He has been living with bed baths since October. Even Jake was looking forward to a shower, and he hates them. As mentioned previously, he is terrified that we will get water in his trach and/or drainage hole. He has mentioned that he doesn't want to drown again. :)
Terri and I have come up with an idea or two. First we decided we would put a chair in our tub/shower. The chair would have to sit half in/half out but that would be ok. This was a good plan but it meant bumping Jake up about 20 stairs to our upstairs bathroom. We still might use this - it sounds good to me. We could also do this when Dave is here - he could carry Jake up the stairs. (just thought of that - good idea :)
The second idea was we could put a plastic kiddie pool in his bedroom and set the chair in the middle of it. Then we could run a garden hose from the kitchen sink to his room (only about 10 feet). The major downside to this is removing the water from the pool.
You know, we are doing well. We are grateful for what we have. We are happy - we laugh and joke a lot. Jake is here with us - we know how lucky we are. I document these things because this has not only become a means of communication to Jake's friends, our family, and our friends, both old and new, but a written history for Jake.
Also I have received emails from people who are days/weeks out of an sci injury. This site has helped many of them deal with their new situation. Some have told me that by reading Jake's experiences, they have been able to keep ahead of any complication that may arise. One woman, Maryellen, said "your web site should be put into a book - and every drunk driver should be forced to read it".
God gives us many tests. But if we realize that He is always there with us - all the time, we should be able to pass these tests with flying colors.
Thursday, January 11, 2001
Those darn wrinkles! Today I stayed with Jake. He started sweating - clammy forehead. Only sweating on left side though. I checked Foley for kinks; checked his back for wrinkles. Nothing. His Foley bag was not empty so it wasn't clogged. He kept sweating, on left side. The sweating was so profuse that it dripped onto his shoulder. We didn't know what to do. I was about to call Terri for some input when I remembered that sometimes if you move an sci person it might help.
Now this is not an easy task for me. He's up to about 123# now. Granted that isn't much, but add in the factor that I have severe osteoarthritis in my fingers, hands and wrists and it ends up being very difficult to transfer/move him, although if push came to shove, I'd do it.
Well I decided to pull him forward in his chair by grasping behind his knees. That's easier for me than to move him to one or the other side. It suddenly occurred to me to check his pants for wrinkles and sure enough, he was sitting on a wrinkle, about 3 inches long, on the left side. I smoothed it out and within minutes the sweating stopped. His forehead was warm and dry again. If you saw that in a movie it would be science fiction.
Tuesday, January 16
Jake is probably going to start back to school next week, on Tuesday, Jan 23rd. The second semester starts Monday, but he'll be at Froedtert having his bladder stones crushed. (hopefully)
Terri and the school had just about everything worked out. 2 classes in the a.m. Jake would get there a little after 8:00 and leave shortly after 11:00. That was great until the bus company decided they couldn't pick Jake up before 9:00, and couldn't bring him home after 11:00. So Terri had to switch classes and make other arrangements. Oh well, everything's going on a par for us.
The school is confident that Jake will be able to graduate with his class this spring. That was very good news.
Jake and I took a short walk on Saturday. It was on the warm side (30's) but cloudy and very damp. He wanted to visit the City Beach (scene of the crime). We had to cross a state highway that runs through the city - speed limit is 25 miles. We had problems with driveways and handicapped sidewalk/road ramps being shoveled. The majority were shoveled, but not to the concrete. There is that bump of snow/ice (in driveways) that is extremely difficult to maneuver with a wheel chair, and when the temp hits 30, it starts to melt, making it slushy and next to impossible to drive through.
We had good luck crossing to the other side - absolutely no traffic coming from either way. But on the way back we had to wait quite a while for a break. Finally no cars except this bright yellow car coming from east to west but he was so far off that I knew we could make it easy. Well, I forgot about those darn driveways. By the time we got past that bump of ice that bright yellow car was coming straight at us, and he didn't slow down.
Now he may have been going 25, but I doubt it. Most everyone goes 30-35 on that street (I don't). I pushed Jake with all my might, and at least got him into the other lane. That little bright yellow car just missed me, and never slowed down, never changed lanes (it's a four lane street). I closed my eyes as he sped by. (silly, I know)
I kept yelling at Jake to go faster, but he panicked, his chair was in slow speed.
Now that little bright yellow car was heading west from Oconomowoc, around mid-day on Saturday, Jan 13th. If you by any chance know this person, ask him to go to church next Sunday.
Jake has been sweating a lot lately. To the point where it drips off his face. We can't figure it out. It could be the bladder stones. He also has a small flap (very tiny) of skin protruding from his trach site which might be causing the sweating. It bothers him a lot, but we do not want to do anything with it. If we would snip it, with our luck it wouldn't stop bleeding or something else would go major wrong. He sees his ENT doc tomorrow. Let's hope that this is resolved then and the sweating stops.
Last Saturday some friends came by and they all watched a movie. Jake enjoyed that very much.
Thursday, January 18, 2001
Jake had a "dry run" at school today. They are in the middle of exams so it was an idea time. The school moved one of Jake's classes to a different room to make it safer for Jake. His teachers and the school nurse were instructed in assisted cough and his other cares. All in all, a very enjoyable day for Jake.
Terri thinks she has every thing worked out so he can go to school in a.m. for 2 hours, then the school nurse will feed him (remember he still can't eat anything so the ProBalance must be given via the feeding tube), empty Foley bag, and change his neck bandage. On some days he will be picked up to go to Froedtert for PT, other days he will be with the school PT for a while. On those days he will have an hour to find something to do before the bus can pick him up so we suggested the computer lab.
We were informed by Froedtert that his PT will only be about one month longer. I hope we can extend that. He enjoys it so much. He is so excited when he gets home from there, he is always learning something new. They are working on assisted transfers now.
Jake and I took a walk down to the shop (Leitzke Printing Co - a family business) after lunch. He finally decided to tackle the RR crossings. Since the sidewalk is right next to a manufacturing company, there are three sets of RR crossings he must face. The bumps were bad, but he managed ok. We went to the road though, they are a little smoother there than the sidewalk.
Actually we spent a good deal of the time in the road due to poor shoveling of sidewalks and driveways.
We had a good time visiting with cousins, then headed back home. Jake was very pleased with himself that he was able to maneuver the RR crossings.
Tuesday, January 23
This is Jake's first day back at school. Here's hoping it's a good one. He was very excited about returning.
Yesterday he had a cystoscopy and an ultra sound. It was determined that he has kidney stones (left side) and bladder stones. I don't know when they will be addressed.
I'm wondering if a lot of his sweating is due to these calculus. I know that sometimes if a wrinkle in his clothing is smoothed out the sweating stops, but sometimes we just cannot figure out the cause. It could be anything from a wrinkle to a sore to whatever???
Last Saturday Jake got a bath! Dave carried him upstairs. Terri lined the tub with towels and Jake had his bath. I turned off my computer because we had to lay an extension cord from my room to the bathroom for a heater. (we have no electricity in the bathroom - we have no sink, walls or floor either but that's a different story).
He was very enthusiastic about this until he realized that we were serious. :) Then the objections started, but the main, big objection was the fear of getting water in his trach hole, or his drainage hole.
Well, he survived, and he was very happy when it was over. He got to see the upstairs; first time since the accident. It was emotional because his bedroom doesn't exist anymore. That's sad. Here he went for a swim, and 6 months later comes back to a room that isn't his any more.
Terri has sent for a plastic swimming pool. We plan on putting it in his bedroom and putting a chair in the pool. Then we won't have to carry him upstairs anymore. Actually we'd have to bump him upstairs in his manual chair. Dave being very tall and strong, is able to just pick him up and carry him.
I will try to post tomorrow about the first day of school. I am having computer problems at home. My boss has given me permission to post at work (during lunch time).
Wednesday, Jan 24
Oh Jake had a great day at school! I think if his grin had been any bigger I would have been able to see it from behind him. :) He has two classes, English and Math. And homework! I quickly volunteered my help with the English and left the math to Terri.
Julie, his tutor, still comes on Tuesday and Thursday afternoons so he is getting at least 4 hours of schooling on those days.
Then on Monday, Wednesday and Friday he goes to Froedtert in the afternoon. Unfortunately, they are cutting him off of PT/OT pretty soon. We are going to try to get in as much as we can before we are refused therapy. (This is not a hospital thing, it's an insurance thing. Since his private insurance was dropped by Terri's employer, he is now on Title 19 (Medicaid).
This new schedule is much better on my working hours, but worse for Terri as her day has been extended an hour or two. Since there is nothing I can do about it, I am going to enjoy the luxury of working a straight 8-1/2 hours at a stretch with no weekend work, no leaving and coming back to work, no vacation hours getting sucked up for medical need.
Of course, this will change when Jake has his next surgery but that's not for two months (about).
Jake had a respiratory problem yesterday afternoon. All of a sudden he had problems breathing. He rattled. I assisted him with his coughing so much I thought for sure he'd have a stomach ache from the abuse. Suctioning didn't help either. It just kept up for more than 2 hours. Then he felt better.
This is ironic, but he had to lay back in his chair during this time - it helped the breathing. And he hated it. Now he doesn't like being way back in his chair.
Thursday, Jan 25th
On Tuesday, Jake's first day at school, Mr. Jaeger, a school employee, measured Jake's wheelchair. The next day he presented Jake with a smooth wooden "desk" that neatly fits over the front of Jake's chair. Sort of a lap-desk. Jake said the smell reminded him of grandpa. (My husband loved to work with wood. Both carving and woodworking). I told Jake to be sure to tell Mr. Jaeger that the next time he saw him.
School is going well for Jake. He still gets off that bus with a huge grin on his face. (and it's been 3 days :) Yesterday he left the house at 9:00 a.m. and got home (from Froedtert) at 5:15 p.m. He was exhausted but happy.