Sunday, February 4th
I'm sorry. I missed a week. I became involved with my computer and with my
work. My work is definitely going better than my computer. |
| Jake's been doing quite well. We have only
ventured out a few times for walks - found out we can visit cousins at
Leitzke Printing now, they have installed a ramp.
But the weather has been too cold and damp on the days we could have made
the trek over there. Don't give up on us, Sandy and Jamey - we'll get there.
:) |
| Last Sunday Klaas and Sue (Big Brother and
Big Sister) visited with their cats. Both the cats and Jake had a great
time. Terri spent the day in her sewing room... sneezing. |
| Jake has been totally involved with school
and his friends. He is forever grinning. One day last week he came home and
he was shaking he was so happy. He said "I am soooo lucky. I can hold a book
in my lap". |
| The other day he revealed to me that he
had been very apprehensive about returning to school because he did not know
what the kid's reaction to him would be. Well, he shouldn't have had any
qualms. They are very receptive to him; curious about his injury. He is
considering a question/answer session so kids can fire away. |
| He sees the ENT doc this coming Friday. In
the last week or so his secretions have abated, again. Up until then the
suctioning had to be done pretty regularly, as the ENT doc said to expect.
Now nothing much to speak of. I have this ominous
feeling that they are going to discover another pocket in his drainage hole
and we are going to repeat this whole round of: surgery, drainage, pocket,
surgery, drainage, pocket... ad nauseam. |
| I am pretty sure we are going into the
fifth month of his tube feedings - nothing by mouth. I'll check back some
day but I believe that surgery was in August. He was getting 8 cans of
ProBalance a day but now we can usually only squeeze in 7. The majority of
his day is not spent at home (on weekdays) and pouring 4 cans into his
stomach between 5:30 p.m. and bedtime is hard on him. There is good in this.
It's hard to believe but there is. Jake has the misfortune to have a very
extensive family history of coronary artery disease and high cholesterol.
With this diet his cholesterol is probably lower than his blood pressure.
|
| The pool came! So yesterday Terri and I
gave Jake a bath in his pool. We put the pool in his bedroom and placed the
bath chair in it. We used pitchers of water because we didn't get a hose
yet. That is just a matter of getting to a store but it just occurred to me
that we probably won't find any on the store shelves yet. Just like the pool
that we finally had to send for. |
| The bath went great and Jake loved it.
That is, after his head was done. I held one hand over his trach and
drainage holes and the other over his eyes. Terri did the washing/pouring.
Jake did not handle that well. But once that was done he was fine.
|
| Jake likes the pool idea but dislikes the
pool. It is a plastic blow-up kind, and the colors really aren't made for a
17 yr old; well I guess the pool isn't either. |
|
 |
The manufacturer has an offer that if you take a photo of your child in the
pool it might win a monthly prize of $20 in merchandise. I am tempted to
send this pic to them, but if Jake won, he'd probably get some rubber
duckies :))) |
| Today is a special day for Jake. A
Waukesha restaurant, Albanese's Roadhouse, is having a bocce ball tournament
and auction for Jake's benefit. Every year the restaurant does this, and
this year they are helping Jake. They have some autographed photos - of
Brett Favre and Bart Starr. Albanese's Roadhouse is near Sam's Club and Home
Depot, at 2301 Bluemound Road in Waukesha. |
| Jake is very excited about going there,
even though it means being transferred to/from a car. This is painful for
him, mainly because of the two holes in his neck, but also because it is
difficult to transfer a tall lanky person to a small car without hitting his
head on the car roof. The way I figure it, the only way we could transfer
him with some degree of comfort is if we removed the car door during
transfers so we could get closer to the seat. :) |
Sunday, February 11th
Last week was fairly normal for Jake until Friday. We had a bad weather day
and the school advised Terri not to send Jake to school. So I came home from
work at 9:00 a.m. to spend the day with him. A friend came over about noon
and at mid-afternoon they decided to go outside in that mess. Jake said "5
minutes" but 25 minutes later I stuck my head out the door and could not see
them anywhere. I was starting to become very concerned. The temperature was
hovering at about 30 degrees, but it was snowing/raining/sleeting -
everything was coated with frozen sleet. The sidewalks were so slippery that
I was afraid to walk on them. |
| Shortly thereafter Jake and Dennis came around the corner, laughing and
having a grand time. Jake had been zooming around the parking lot that was
around the corner, just out of sight. They had decided to come in for a
while to warm up! He could not understand why I was upset. Well, once I
discovered that he was not freezing, and he was not tipped over and laying
in frozen rain/sleet with his power chair on top of him, and he was not hit
by a car sliding out of control, I calmed down. Good thing, because Jake
wanted to go back outside! |
| Yesterday Terri left around noon to do some shopping. We still need some
sort of a mini-ramp from the front door threshold to the porch door. It's
quite a bump for Jake each time he enters or leaves the house. He also needs
some clothes since he's back in school now. |
| I don't know why, but for some reason I asked her to call every two
hours - just to keep in touch so I know where she is and she knows how we
are doing. |
| Jake had a dysreflexia incident. He started sweating and pretty soon he
had a headache. Couldn't find any wrinkles. There was nothing in his Foley
bag. It never occurred to me to take his blood pressure - I was too busy.
|
| Three of Jake's friends had come over to watch a movie with Jake and
they were pretty cool about everything. They sort of kept watching the
movie, talking to Jake off and on - kind of keeping in touch but letting
Jake alone at the same time. I guessed they either sensed or knew that Jake
did not want them to go home. |
| Well, Terri hadn't called yet and I was running out of options. I did
not know how to change a Foley. I told Jake he had 3 choices... 1-we
could call 911 (too drastic to change a Foley?) 2-we could toss him
into my car and take him to the hospital or 3-I could pull the Foley
out. Jake did not like any of the choices but opted for #2 as being the best
for him. Then he asked if I would try to irrigate his Foley. Well I had
never done that. I asked him if he could direct me and he agreed. He did a
grand job. I irrigated the Foley like a pro because of his superb direction.
|
| His headache vanished, and the sweating dissipated. I was full of pride
at the way Jake acted - under extreme pressure and discomfort. I must give
kudos to his friends also. They didn't run out on Jake - they remained calm
and cool. I must tell you though, it's amazing how quickly a room empties
when the words "irrigating the Foley" are uttered. :) |
| btw, Terri called just as I was finishing the irrigation. I learned a
valuable lesson yesterday. I must be instructed in all of his cares - not
just the ones I do on a regular basis. Saturday would have been much easier
on Jake and me if I had not been lax in that area. |
Wednesday, Feb 14, 2001
Happy Valentine's Day! |
| Lately Jake has been plagued by leg spasms, especially at night. They
are so severe that his position changes so he must call Terri. Consequently,
neither one of them have been sleeping well. |
| There are drugs available for this, but Terri has been reluctant to ask
for them for a number of reasons. The spasms actually help - it "exercises"
the muscle. Jake's had such bad luck with meds the less he consumes the
better. The muscle spasm drugs inhibit muscle growth, and Jake needs to
build up his biceps. |
| But Terri has acquiesced. Jake will use baclafen, 1 tab, every night.
|
| We have been told that sudden increase in spasms usually is an indicator
of something wrong. We didn't know this. It could be his bladder/kidney
stones. He doesn't have any skin ulcers at this time. |
| He gets the stones blasted next week, I think Terri said Thursday. Maybe
the spasms, and the dysreflexia incidents will abate. That would be
terrific. |
Kris and I went to see Hannibal last Sunday. Jake wanted to go along
(desperately) but our transfer person (Terri) would never have made it
through that movie. She's a wimp. :))
But to get to the point, we discovered that Mayfair Cinemas have handicapped
seats. This is great! When you walk in there are seats in the front, then
stadium seating behind and in the middle are 3 sets of two seats, with a
large space in between to accommodate a wheelchair. Very
nice. |
Tuesday, February 20th
When the fistula was discovered in Jake's neck (Aug 2000) the docs really
didn't know how to treat it. We were told that this is a rare occurrence.
Yesterday Terri found out that since then two other patients on the sci
floor at Froedtert have developed the same thing! |
| Jake absolutely loves therapy. He is thriving on it. He is nagging Terri
to build him a mat/table for home use. She told him it's third on the list.
|
| Jake gets an IVP on Thursday. Intravenous pyelogram. I think those
stones are causing a lot of Jake's problems. I had hoped that would be taken
care of on Thursday, but it doesn't look like it. |
| The ENT doc wants another swallow study. He claims the lack of
secretions could be good, could be bad. Jake could be pooling again, but the
ENT doc says Jake is very healthy now (on 8 cans a day of ProBalance) and it
could be that it is healing. Jake was thrilled to hear that. He said he
wouldn't mind going a couple more months sans food if it meant no surgery
and a healed throat. Doc doubts that Jake's surgery days are over though.
We'll see on Friday. |
| We are starting to look for a van. Terri says we need a "conversion"
van. I don't know what that means, but if anyone hears of one for sale,
reasonable price, please let us know. Then we plan on installing a lift,
hopefully hydraulic. |
| Today a photographer is coming to take graduation photos. I'll post as
soon as we get them. |
Thursday, Feb 22, 2001
Well, Jake supposedly had his IVP today. They were supposed to be home by
12:30; now it's 3:00 and they still aren't home.
Do mothers/grandmothers ever stop worrying? |
| On Tuesday Jake posed for the photographer in his manual chair, without
his neck bandage. We had discussed turtlenecks, the bandage, or having the
neck area digitally corrected. He decided that he would pose with neck
exposed, and that he would not get it covered up with the skills of the
photographer. He said "that is me - if the photographer covers my scars and
holes, it won't be me". :) |
4:00 p.m.
Terri and Jake just got home. We forgot about the automatic 2-3 hour wait in
the x-ray waiting room. They have little slips printed up (honest-they
really do, Terri has four of them now) that they hand out to the patients.
It thanks them for being patient, and gives them a free drink in the
cafeteria. Now I'm just a lowly coder, but wouldn't it be easier, and less
costly, and more customer-friendly, if they would just hire someone to
schedule more appropriately? |
Sunday, February 25th
Jake had the IVP on Thursday. Not a pleasant time. The actual test was ok,
but the prep was not. For an IVP the patient must clear his intestinal tract
to assure that the technician has an unobstructed view of the urinary
system. The harsh prep did not take into account that Jake is 130#, on a
liquid diet and is a quadriplegic. He is still suffering the consequences of
both that medication and the barium from Friday's swallow study (this is 2-3
days later). If he must ever have that again, we will not follow those
instructions. It will be at our discretion, but of course we will inform
them of our intentions. |
| Next Friday, March 2nd, he is finally going to have those stones
zapped. Only the bladder stones though. The urologist says that the kidney
stones are small and probably won't cause any problems. The doc is going to
monitor them and if they become larger, he will address them at that time.
It seems that quads lose calcium in their bones, and sometimes it may form
stones. That is probably why he has the bladder/kidney stones.
Unfortunately, urinary problems are a major source of dysreflexia incidents
for Jake, with wrinkles in his clothing being a very close second. |
| Friday he had another swallow study. This one went much better than the
last one. Last time he aspirated some of the barium (in his trach) and
coughed, wheezed and rattled for 3 days. The technicians had insisted that
Jake lay on the side that insured the flowing of the barium into his trach
(gravity) and nothing Jake or Terri said to them would make them change
their minds. This time Jake said if they (the x-ray technicians) didn't
listen to him that he would refuse to drink it. And rightfully so. As Jake
has been told all along, it's his body, his responsibility. The
hospital/doctors/staff have all told him that everything that has happened
to him is his fault, from the accident (true-it was an accident, but if he
had not decided to go swimming it would not have happened) to the fistula
(false) and everything in-between (true and false). But we won't get into
that. This is Sunday, my day of peace. Most of his "faults" are documented
in prior pages. |
| But the good news! We have not heard from the ENT doc yet, but the
technician said that it looks like Jake is swallowing 60-70%. It is making
it into his stomach, not flowing through the drainage hole. That is why his
secretions have been next to nothing. We hope. We have to talk to the ENT
doc before we become too enthused about this. During his last swallow study,
which I think was in December, next to nothing was making it into his
stomach. It was all coming out the holes in his neck (both the trach site
and the drainage site). |
| Jake is very healthy now. He has been on a liquid diet for over 6 months
now. He keeps changing his mind about what his first meal will be.
Turkey (his Thanksgiving feast that he missed), pizza,
chili. We keep telling him that unfortunately it will be clear
liquids, and he will probably throw that up. He knows that. After all the
talk, he goes back to his first fantasy. He wants to drink a huge glass of
water. He wants to taste water and feel it flow down his throat. |
| Today Jake and Terri showed me how he can lift himself up with his arms.
If Jake is laying down and Terri grabs his wrists, he can pull himself to a
sitting position. Now you have to remember that all he has is his biceps.
Nothing else... no triceps, no abdominal muscles. He can also lay back down
by himself, using his elbows as a brace. |
| I was very impressed. He is getting very strong. Next project for Terri
and me is to bring our exercise machine up from the basement and revise it
to meet his needs. And that exercise mat must be upped to second on the
list. :) I also want to rig some sort of trapeze above his bed so he can
exercise his arms. Unfortunately, my talents lie elsewhere and Terri is
trying to squeeze 30 hours into every day now. It will get done. The
important things always get done. |
Tuesday, Feb 27, 2001
Jake had a good morning but after the bus dropped him off from school he
started rattling and coughing. I was constantly assisting him with coughing.
He kept bringing stuff up. It wouldn't stop or lessen. He ends up swallowing
some of it. Between that and the assisted coughs it's a miracle that he
isn't throwing up. Julie, his tutor, is getting used to this. The last time
he needed a lot of assisted coughs when she was here she decided to leave
early. :) |
| Jake attends school every morning - 2 classes. Then Julie comes two
afternoons each week to tutor him. With this schedule he should be able to
graduate with his class in June. Yes! |