June 2001

Sunday, June 3rd
Jake graduated from high school today. Congratulation, Jake.

Jake surprised me yesterday. A few weeks ago I mentioned that he likes to lean forward in his chair as far as he can (to stretch out his body), but he couldn't get himself back up. Well he can do that now. He's able to maneuver his elbows into the arm rests and then push himself back up. Way to go Jake!

In the past two weeks or so, his sweating (dysreflexia) has subsided. Maybe his body's adjusting? But the spasms are getting worse. PT person says if we can't figure out a way to lessen the spasms he will be forced to cancel therapy until the spasms are less severe. So Terri has started giving Jake more Valium during the day. She really doesn't know what else to do to subdue the spasms. So Jake is kind of sleepy all day now.

He spent the better part of yesterday on the computer. It's not a 'learning' type of surfing, just fun stuff. But he is getting very coordinated with his right hand. This was his dominant side before the accident but now is the weaker side. He uses a cordless keyboard that is placed on a 'desk' that is attached to his power chair. He can punch out the letters with his right hand. Then he has a special brace attached to his right hand with a computer pen attached to the brace. We place a table to the right of Jake and put the tablet part of the pen/tablet set on the table. That is how he maneuver's around the screen. We also place a mouse ball on the table so he has the capability of 'right-clicking'. With a mouse ball there are large buttons for right-click/left-click functions. He does well with this system. I will photograph this setup the next time he goes on the computer.

Today Jake will be in his power chair for the graduation. In the van, he will have to lay all the way back (in the chair) so he will fit. The manual chair is closer to the ground so he fits ok in that. Except getting in and out. Terri uses a tip/pull method to get him into the van. She tips his manual chair and starts pulling him in at the same time. It usually works well. Yesterday she tipped a little later than she usually does and clocked him in the head.

The van is beautiful. With the hydraulic lift it is a breeze getting him in and out (except for the low ceiling). But we have discovered that there is barely enough room in the handicapped parking with that lift. Even in the 'van accessible' slots it is sometimes difficult to get the chair in and out. We need at least 3 feet additional room after the lift is extended so we can wheel Jake off the ramp. You can only exit that ramp straight ahead. So at a guess I figure we need about 7 feet of room to the right of the van for safe, proper exiting. And if the ramp is not settled evenly, the front safety bar will not extend, making it impossible for Jake to exit. I think we will have to have a board in the van to help make that area even at times. (for instance gravel, or an uneven driveway - like ours :))

Got a pic of Jake getting "loaded" into his van in his power chair.

This was a very exciting day for Jake. The rain stayed away but it was overcast and chilly. It was a looooong afternoon and I got a little worried about Jake but he did fine.

I took the above pics right before we left for the ceremony. I have more but they will have to wait. It's getting too late (for me :).

Sunday, June 10th
Jake has been having many problems with leg spasms during the night. It means Terri makes frequent trips up and down the stairs in the course of a night. When Jake first came home from the hospital we were supplied with an air mattress for his bed that automatically inflated-deflated at timed-intervals. We were told that the mattress eliminated the need for 2-hour pressure releases. Well, it did, but I think it causes Jake to spasm. It's his legs that cause the biggest problem. They straighten out and make for a very uncomfortable situation for Jake. So he calls Terri, who then must move his legs so Jake can sleep.

One day Terri transferred Jake to his bed while the mattress was inflated, causing one of the 'bubbles' to pop. So from then on she always waited until after transfer to inflate the mattress. Well one night she forgot, - and he slept through the whole night with no automatic pressure releases... and no spasms.

It is not good to sleep in one position all night. Statistics claim the average person shifts position about 45 times in the course of an 8 hour sleep cycle. Somehow we must figure out a happy medium.

Jake is volunteering at a nearby nursing/retirement home in the mornings. He absolutely loves it! He talks, and listens, to the residents. Since his absolutely favorite thing is to talk, he is in his glory.

He still goes to Froedtert on Mon, Wed and Fri afternoons for physical therapy. They have stopped his occupational therapy. That distresses me but there is nothing I can do about it. When they stop a therapy, they are telling us that there is nothing more they can do for that person. This is not faulting the OT person. OT can't do anymore because of Jake's capabilities.

btw, Jake has asked me to change the description of his injury that I post at the top of this page. He and Terri have done much research, and they think that his injury is not complete. They base this conclusion on different criteria of which I will get into more detail at a later date. Also they think his left and right are different level injuries.

Jake had a great time at his graduation party today. So many friends and relatives came to help him celebrate.


Some of his friends gave him a special gift.
yes, he is smiling under all that mess. :)

Sunday, June 17th
Jake's surgery has been scheduled for June 28th. The ENT doc will close his throat hole with grafts from his chest. It is a long procedure. The doc intends to make a rather large sideways 'V' incision on Jake's chest, starting at Jake's upper left, over to midline, then down to lower left. This incision will extend from just below the collar area to about the end of his rib cage. As I said - a rather large incision. This will allow the ENT doc a good choice of graft material.
Jake's tracheostomy will not be closed at this time due to the type of surgery he is having. There is a very good chance that his throat will swell during the first few days of recovery, in which case a trach tube may be necessary. The closing of the trach hole will come a little later, and will more than likely be done as a one-day procedure.
As mentioned previously, most trach holes close by themselves, but due to the length of time Jake had the trach tube in him, this will not happen.
We expect Jake to be at Froedtert for one week; he'll probably come home July 4th or 5th.
We have discovered that the heat is not a friend of sci people. Jake has been doing fairly well, but last Thursday was difficult. It was in the 90's, rather high dew point. He seems to monitor himself very well - he would go down to the city beach for a while, then come home (after an hour or so) and get some water or Gatorade. He would then tell me when he'd be back, and he usually was on time. (impressive)
But he is still wearing sweats. He does not want people to see the Foley bag. He doesn't want people grossed out over that.
Around 3:30 last Thursday Jake came home much earlier than he had said he would. He was not dehydrate, just very warm. He laid back in his chair and for 1 hour I put ice on his head, chest and feet. I also had two fans directed at him. He wanted me to cut his sweats; I wanted to pull them off. I ended up rolling the pants legs up as far as I could.
Jake saw his urologist on Friday. He has no recurrence of bladder stones. Jake had a 'cysto', (which he was not expecting). But the procedure demonstrated a stone-less bladder, which is cause for thanks. His kidney stones are still there, but are symptom-less, and being watched carefully.
The doc gave Jake a Foley bag that is attached at the waist. This was very good news for him.
We are able to keep the van in our driveway now. The big old maple in the front yard is gone, which makes room for a car. And yesterday Terri moved the mounds of leftover gravel (from building the ramp) from the driveway. Now we not only have room for our cars and the van, we can also accommodate a visitor!
The night spasms are a little better, but still present. It seems that he has two times when they are the most active - between 1:00 and 2:00 a.m., and then again around 4:30 - 5:30 a.m. It just occurred to me that maybe we can work with that information since it seems to be fairly consistent.
Jake has a swallow study this week, then a lot of pre-op exams next week. Let's pray the swallow study is a good one, and the surgery will not be postponed again. This is the same surgery planned for last December 21st, which was cancelled due to the poor results from the swallow study.
Yesterday at the city beach Jake 'accidentally' got into some water. Today his power chair won't work. So he must be in his manual chair all day. :)
Bet he will be more careful from now on.
Happy father's day. If you are fortunate enough to still have your father, I hope you both enjoy this day together.
Sunday, June 24th
Jake aced the swallow study. The physician looked once, then studied it closely. He thinks Jake's esophagus tear has healed completely! His surgery has been cancelled for a second time but this time because there was no need.
Jake is allowed to eat soft food for a while before graduating to a regular diet. Terri told him that if he could eat it without using his teeth it would probably be ok. He didn't object. Water and cotton candy are on that 'list', so is the lasagna I made Friday. Unfortunately, the chocolate mint girl scout cookies are still a no-no.
Jake is still going to need surgery - his trach must be closed, and the drainage hole on the left side of his neck also needs to be closed. But at least they won't have to make that huge incision into his chest. He was very worried about that. I don't know when that surgery will be done.
Jake has called me down two times (so far) this early a.m. for help due to his spasms. Both times all he could talk about was food. "have you made banana bread lately?" "do we have any fruit?" "I can't decide what I want for breakfast" "do we have orange juice?". The ENT doc has unleashed a food monster! Oh, we must be careful or that skinny kid is going to grooooowww! It has been a 9 month NPO status for Jake. He is coming off a 9 month diet of liquid nourishment via a g-tube. Of course, he still gets some of the liquid feeding since he is only allowed 'soft' foods for a short time - I think mainly to make sure that tear is healed. Don't want to take the chance of poking through very weak tissue.
Friday morning Jake felt cold. He asked for a sweat shirt. This is not normal for him and we should have been more alert. Terri took him to the nursing home, where he is volunteering this summer, and soon he had to call her. He was becoming dysreflexic. Terri went there; examined his Foley, and sure enough, it was kinked. As soon as she straightened it, Jake 'filled' it. We must be more aware of changes in Jake's norm. Then this would have been discovered before he left the house.
Jake has become friends with Oscar, a resident of the nursing home. Oscar loves to fish, and loves to talk. (kindred spirits :)