Sunday, March 4th
Jake has bronchitis. The doc put him on albuteral, an inhalant. It has
helped, but Jake still must be lying flat or as far back as possible in
order to breathe comfortably. This is so ironic. He hates being so far back
in his chair, the only position he would accept a few months ago. |
| As a refresher, quads use different muscles to breathe. If we have
trouble breathing, it is usually easier if we sit up. In Jake's case, it is
easier when he is lying flat. Some of it has to do with gravity, some with
muscles. |
| Last Thursday Terri and Jake had a conference with school officials.
Terri spent a good portion of that conference helping Jake cough. I think
the school officials learned more than they ever wanted to know about
assisted coughs. |
| If we can coordinate with the school bus system, Jake will be able to
attend school full time on Tuesdays and Thursdays. On Mon, Wed and Fri he
still goes to Froedtert for therapy. |
| This was especially good news to me on a personal basis. My monthly
department meetings are on Tuesdays and I have not attended one since last
July. I am fortunate that I have a very understanding supervisor. |
| Jake's bladder stones were taken care of on Friday. They removed all of
them but one. That one was so large they zapped it instead. During the
procedure he had a dysreflexic incident. The urinary doc was aware of the
possibility of one; he kept a close watch on Jake's condition. Jake
developed a mild headache, which soon turned into a major head-buster.
Luckily this was close to the end of the procedure and as soon as it was
finished, his headache vanished. |
| After the procedure Jake saw his regular doc. That is when the
bronchitis was diagnosed. The doc also said that if Jake ever needs
another prep like the one he had for the IVP, it
is possible that his normal a.m. cares will suffice. We should discuss this
with the doc who orders the prep. |
| This is a good example of why we (everyone) should not assume that
health care experts always know what's best for the patient. People should
always question everything they don't understand or feel is not right. In
this case, that prep would have been fine for an average healthy adult who
is eating normally (solids and liquids, by mouth) and has a normal daily
bowel function. It was not appropriate for a quadriplegic
who is being nourished by tube feedings. |
| Jake has been getting weekly baths on Saturday mornings. It literally
takes up the whole morning for the three of us. Yesterday we had to pass on
the bath because Jake has such difficulties breathing in an upright
position. So today after church we will be doing the bath routine. That is,
if his breathing is better. From what I heard all night, both he and Terri
were awake more than asleep (from coughing/assisted coughs). |
Sunday, March 11th
We have Jake's graduation pictures, but Terri has to scan one for me. I can
see my scanner, but can't get to it. All my computer stuff is crammed into a
corner in my bedroom pending overhaul of the computer room. :)
As soon as Terri gets it to me, I'll post it here. |
| We gave Jake a bath yesterday - we missed last weekend because of his
bronchitis. Well, I think we should have missed this weekend too. He
constantly needed assistance with coughing (because he was sitting upright)
and consequently the bath became a lengthy process which resulted in Jake
becoming extremely cold. It took forever to warm him after the bath. |
| We are concerned that he may have re-injured his esophagus with all that
coughing. He is starting to "goo" again. But we haven't had to suction yet,
at least I haven't. Let's pray for the best. |
I want to tell you about Jake's amazing self-control.
Terri bought some girl scout cookies... the mint
kind. You know, the small, round, thin cookie. Well, she put some on the
table near Jake. He studied them for a while, then
maneuvered one into his hand. Then, before Terri could blink, it went into
Jake's mouth. He just sat there... with the cookie in his mouth, his eyes
closed. After a few minutes, he spit it out, whole, into Terri's hand. |
| Sometimes that boy amazes me. (and other
times I could throttle him). He probably says the same thing about me. :)
|
Monday, March 12, 2001
I suspect that Jake might have pneumonia. He spent most of yesterday in bed,
coughing. Mostly assisted. His stomach must be
worn out by all the pushing. |
| It was not a good night either. Terri was up a lot helping Jake with his
coughing. Also his spasms. The meds are helping
(the spasms) somewhat, but sometimes they are quite severe. |
Tuesday, March 13th
Jake and Terri spent >10 hours in Froedtert’ s ER
yesterday. He was admitted last night with a diagnosis of dehydration and
fever. He has a lung infiltrate (knew that from last week) but haven't heard
the word pneumonia yet. Terri got home at 12:30 this morning.
Thank you thank you, Mark, for your help. You are
an angel. Hey Dorothy! Have you ever used "Mark" and "angel" in the same
sentence? :)) |
| I am hoping that Jake will be discharged tomorrow. Once he gets
dehydrated, no reason we can't take care of him at home. |
Wednesday, March 14th
They have discovered a "bug" in Jake. But Terri didn't write down the name
of it so that information will have to wait. He is being treated with an IV
antibiotic. |
| Well, I guess a big snow storm is headed this way. I asked Terri to see
if Jake could get discharged today so we (I) don't have to worry about road
conditions. Told her to find out how to give injections.
We can give Jake his meds. She hedged! Said she'd have to think about that.
My daughter, who is willing to take on any task that God gives her, doesn't
want to stick a needle into Jake. |
| Guess we'll have to see what develops. Yes, I do understand that IV
antibiotics really can't be injected but I thought under the circumstances
there might be an alternative. And I have no qualms about injecting him.
Though first someone will have to show me how.
|
| In the mean time Jake is having a ball! He is on the SCI floor (Terri
had to fight for that) and this is old home week for him.
Visiting all his friends. Since they dehydrated
him he perked up and is feeling quite normal (for him). He does not
like the respiratory treatments though. They make his heart race and that
scares him. |
Thursday, March 15th
Jake came home late yesterday afternoon. It was a great surprise for me.
Terri walked in and said "Jake's on his way in the courier van". The little
snot wasn't home 5 minutes and he wanted the phone (and of course to be left
alone). |
| He's feeling loads better, but unfortunately still has that darn cough.
He is on an antibiotic, one pill a day. |
|
Sunday, March 18th
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Well, finally we got this photo online. I think this is a good photo of
Jake, don't you? He didn't change his mind, either. No touch-ups. "that
is me, and that's the way it is". Everyone liked this pose the best, even
the photographer. It just so happens that his neck hole is less obvious in
this photo than the others, and you can't make
out the tracheostomy at all. The top of his shirt is covering it. (the
trach hole is very tiny - smaller than the size of a pencil).
|
|
One day last week I
walked into his room and he said "I can't stop coughing, and I am so dizzy".
Well, that really got to me. So much has happened to this boy in the past 8
months! One thing after another. When we finally
win one battle there is always, without fail, another one waiting to attack.
It ended up that he was comforting me, telling me that "it will get better,
grandma, it will be all right, I promise". |
|
Jake is finally starting
to feel better. He missed school, and therapy, all last week. On Thursday
Kathie stayed with him so I could work but on Friday I had to come home at
8:00 a.m. to "boy-sit". The coughing is less which is great news for his
stomach. That assisted cough really takes a toll on your abdomen.
|
|
It is supposed to be very
nice outside today. If Jake is up to it, Terri is going to try a
car-transfer. We have got to get him out of this house.
Even if it's just for a drive around Fowler lake. (If we took him to
a store or to visit someone it would mean 2 more transfers). |
|
Terri has enough money
for a down payment on a van now, thanks to the generosity of many people,
but finding one is another matter. |
|
Jake now has a box of
mint girl scout cookies in the freezer for when he can finally eat
something. Thank you Karen. He reminds us of
these cookies almost daily. :) |
|
Saturday, March 24th
Jake's coughing has slowly abated; his requests for assisted coughs are down
to one or two a day. The antibiotic is wreaking havoc with his digestive
system, but is killing the bugs. His life is getting back to normal (for him
:). |
|
There hasn't been
anything to report this week. Things are pretty stable. I would like to keep
it that way. |
| Sunday, March 25th |
| Yesterday's bath went much better than the past 3 weeks have. His
coughing is minimal now; no need to stop every few minutes and assist him in
coughing. |
| We caught a dysreflexia incident before it blossomed into a major
problem. Terri was helping me hang a shelf when Jake called us. He had a
small headache. He knew it was a dysreflexia headache, not sinus. I took his
blood pressure (130/70). Now I would kill for that b.p.
but for Jake that is high. We immediately checked for wrinkles in clothing
and blockages in the Foley. We found nothing major - the Foley released a
little urine when Terri investigated, and I found some small wrinkles. But
the headache abated, and his b.p. went back down
to 100/68. The interesting thing was that Jake did not have cold clammy
sweat on his face/forehead. We got to thinking, and he really hasn't had
that symptom since the stones were blasted. |
| There is not much more to report. Let's hope that this week is very
dull, and nothing major happens that needs reporting. :) |