Sunday, May 6th
Jake has bronchitis again. We thought it was just a head cold, but it's more
serious. The therapy doc has Jake on an antibiotic again, but this time he
prescribed a milder drug. Hopefully there will be fewer unpleasant side
effects. The OT person said that it is not unusual for an SCI patient to
have frequent respiratory problems due to their inability to take really
deep breaths. Right now every breath Jake takes emits a gurgle/rattle. And
when we assist him in coughing, even though he holds his hand over the trach
hole, a lot of his air blows out of it. Cough assists have been numerous,
almost constant, lately. He is on day 2 of his medication now, so hopefully
things will get better soon.
We have decided, and Jake concurs, that he is going to have to go back to
his breathing exercises - probably on a permanent basis. It involves a small
plastic gadget - when you either breath in or
exhale out (I forgot which) a little ball rises and shows you how well you
did. Object is to get the ball to go as high as possible. He absolutely
hated those exercises, and stopped them as soon as he was told that they
weren't required anymore. Well, he doesn't like bronchitis - hates that more
than the exercises. |
| Between his respiratory problems and his spasms, Jakes nights have been
extremely rough - on both Jake and Terri. The therapy doc also started Jake
on Valium for the spasms. He is already on maximum dosage of Baclafen. Jake
seems to think that the Valium is helping but it's been too soon to tell. We
were wondering if valerian root would be helpful instead of the Valium.
Anybody have any thoughts on that idea? |
| The wheelchair people put a strap on the legs of the power chair. His
calves rest against it. His spasms are so bad that his legs keep slipping
out of the chair. He can't put them back in the leg rests... yet. (I hope)
|
| The ENT doc referred Jake to a lung doc. The ENT doc claims that his
respiratory problems have nothing to do with the trach hole. The therapy doc
says it does. Regardless, the hole must not be closed until all his
surgeries are behind him. At least the ones we know are coming up soon. So
Terri called the lung doc (about 1 month ago) and made an appointment. They
scheduled Jake for May 23rd. |
| Last week when Jake's coughing just kept getting worse and worse Terri
called them and asked if they could get Jake in sooner. Well it seems that
this lung doc only treats adults, and Jake won't be an adult until May
17th. That's why they scheduled him for after May 17th. (honest
to goodness truth) I guess something magical happens on that day - he's
treatable! They suggested we visit Froedtert Emergency Department.
Despite the fact that Jake needs a lung doc now, they
will not schedule him before he becomes 18. |
| I suggested to Terri that maybe, just maybe,
this lung doc is not for us. Of course, we'll try him out but I wonder how
many SCI patients he has? SCI patients have a whole different set of rules.
My thoughts are that if this lung doc won't even treat Jake for two more
weeks - just because he is two weeks younger than the doctor prefers - maybe
he won't even look into the possibilities that maybe Jake's respiratory
problems need to be treated differently due to the fact that he is
paralyzed. I bet SCI people run into this problem all the time. Am I
right??? |
| Health care people need different guidelines/criteria for treating SCI
patients. For instance, a few months ago a PT person who is not usually in
contact with quads started to range Jake and when his spasms took over the
PT person said "relax, I'm not going to hurt
you". When she said that to Jake it totally blew his
mind. He is used to the SCI staff at Froedtert,
who understand the special needs and rules of quads. |
| note: the reason I refer to Jake's contact
people as: lung doc, PT person, ENT doc, etc is because I wish to
differentiate between them, for your benefit but mainly for Jake's as this
is an on-going record for him. I do not wish to personally identify them.
When I write "ENT doc" Jake can immediately put a name and face to that
person. That is my main objective. |
Terri finally called the photographer. We still don't have Jake's
pictures and he wants to take some to school. It's been two months since we
ordered them. Seems it took so long because the photographer sent the
negative somewhere so that Jake's neck could be retouched. As you recall,
Jake decided that he did NOT want his neck retouched. Guess the
photographer either didn't remember that or decided that his work would look
nicer being touched up. (I think his photographs were great as is) He told
Terri that it added "very little" to the cost - that they did a good job. So
now we must wait another week or so to get the photos - the way we wanted,
and ordered them, in the first place.
btw, in case you're interested - that touch up
job is simple for anyone with a graphics program that has a clone brush. I
could have done that in 5 minutes. (which I did
NOT do, since Jake didn't want this done). I'm not saying all touch up jobs
are easy - they are not. But Jake's would be
easy. |
| Terri got Jake's school progress report yesterday. Remember the Monday
that Terri had to take Jake to Froedtert for neck x-rays because he fell out
of his chair? Well, it seems that the math teacher doesn't consider that a
legitimate excuse. She gave him an incomplete/unexcused absence for that
day. (yah, you really gotta watch those quads -
they'll do anything to get out of math). She's the only one of Jake's
teachers to mark him unexcused for that day. Wonder what she'll do about
tomorrow? Jake is going to WCTC for an evaluation regarding his schooling
after high school. Maybe she'll excuse that because it's education-related.
|
On a personal note - my computer (very clean and empty) is running
again. Thanks entirely to my friend Matt. He reformatted both drives, and
installed Windows 98 for me. He also re-installed all my drivers. He tried
to install another 32MB RAM of memory but my mother board is bad. I only
have 32MB RAM of memory and running graphics programs
really requires at least 64MB. So I run s l o w. BUT, faster than
before Matt erased my drives. :) This will keep me going for a while.
I have lost all my email addresses and messages mailed to me before last
week.. They are on a backup, but I installed a
different email program and don't wish to install my old one just to get the
addresses. |
| Well, here's hoping that today will be a good day for Jake. If the sun
would come out and things would dry up a bit I think he would cough less. He
has a double whammie because of his very severe allergies to pollen, grass,
etc. Of course, if people would cooperate and stop mowing their lawns Jake
would feel a lot better. :)) |
Sunday, May 13th
Jake got an early birthday present yesterday. He regained some of
his freedom. Isn't this van beautiful? Thank you to everyone who gave so
generously to make this possible. |
|
 |
The grin never left his face until he went to bed last night. I suspect he
fell asleep with the grin still in place. :) |
| The van does not have a roof extension so Jake cannot use his power
chair in it. Actually the power chair fits, but Jake must lie back in it to
the point where he is staring at the roof of the van. Also to get him into
the van, because he is so tall, we must tilt the manual chair back quite a
bit so he can clear the top of the door. Once he's in the van he can sit ok
in the manual chair. Our next major goal is to raise the roof of that
vehicle. |
| Terri took Jake on a short excursion. They went to 2 stores. This was
the first time he has been in a store since last July. He was so excited
when he got home that he wanted to go to a party that night. But after about
10 minutes he changed his mind. He was pooped! Decided he'd rather go to
bed. :) |
| Jake's evaluation at WCTC went well. He is interested in becoming a
psychologist, and counseling sci patients. With his personality, he would do
well in this vocation. The evaluation results agreed. It also listed a
number of other areas in which Jake might excel, which was very encouraging.
That is until, toward the bottom of the list, we read "stuntman"! |
| Jake really surprised me last week. He wrote me a letter! All along I
have been quite adamant about him learning to write, or print, his name
(signature). He said he could sign with an "X" and I refused to even
consider that. I told him that was not acceptable to me - not an option.
Well, it seems that since he's been on the computer so much lately, with the
pen and tablet as his tool, he has learned coordination in holding a pen. I
think it surprised him as much as me. He needed to sign some documents so
Terri put a pen in his brace and held the document on his table. He did
quite well and I was brought to tears because I did not know he could do
this. Then he wrote me a short letter. |
| Before his accident Jake had a very nice hand-printing. I liked it so
much I had decided to make a font from it. Of course, that was one of those
"some day" jobs that I didn't get around to accomplishing. After the
accident I thought it was not meant to be (the font) but now maybe it is a
possibility. |
| His sweating is becoming a daily part of his life. It is terrible. He
will start sweating over the smallest detail - mostly dumb wrinkles! He
develops a cold, clammy, sweaty face (mostly forehead) and depending on the
severity, extends to his scalp, neck and shoulders. No where else. Just
where he has control of his movement (it seems). It never ceases to amaze me
- the second we discover the cause his forehead is dry! He knows it too. The
second we correct the cause, he says "that was it". I think this is
dysreflexia - I'm not sure. It isn't the severe dysreflexia that happens
when his blood pressure sky-rockets, and his head starts pounding. That's
usually a clogged Foley, or a huge wrinkle - it was the bladder stones until
they were zapped. He hasn't had a bad dysreflexia incident in a long time.
|
| I have run out of time. More later today if I
can manage to get back to my computer. One last parting note: Jake has
called me numerous times this early a.m. - all because he was sweating so
profusely. (after the 5th call we finally got
it!) Every time I went down there his first words were "I love that van".
:)) |
Thursday, May 17, 2001
Happy birthday, Jake! 18 years old. I love you. :) |
|
HAPPY BIRTHDAY JAKE!
18 years old! |
|
Sunday, May 20th
This past week has been fairly quiet. Dysreflexia
has been at a minimum. He's been sweating, but it's been from the heat. You
can tell - it's a different sweat. The spasms continue as usual.
|
|
We thought we might get
central air conditioning so Jake is more comfortable. We called Sears for a
free estimate and after the "gentleman" heard how old our house was he said
it can't be done and didn't even want to come out and look at it. He told us
to get portable units for every room of the house. Quite
a salesman, huh? |
|
Jake has the habit of
sitting straight up in his chair, then falling forward so he is laying on
his lap with his arms straight out in front of him. This is one way he
stretches. The problem is he can't raise himself back up to a sitting
position. I'm working with him on that. I am trying to get him to swing his
arms onto his knees, then push himself up.
Problem is his head is in the way. :) With a little help he can get his arms
between his lap and his head, but he has no energy left to push himself up.
In time, this will work out. |
|
He is getting very
adventurous. Last week he decided he wanted to go to a
friends house - about 7 blocks away. Alone, in
his power chair. The route included going over RR tracks which are a
little scary for him. We have practiced - I think I reported that a couple
months ago. If he approaches them straight on, absolutely no angle, he will
be ok. Well, he decided to go a different route. It was much longer but no
RR tracks. There is a tunnel in Oconomowoc that goes under the tracks. It's
for pedestrians only - he went out of his way to use the tunnel. He was
back home in about 10 minutes. He forgot he
needed food (can of ProBalance). He filled up and then was on his way again.
btw, this little excursion was much more
difficult for Terri (and me) than for Jake. |
|
He is learning that
before he can go anywhere he must check many things. His
Foley, his charge on the chair, weather conditions, and until he can eat
something by mouth, his "eating" schedule. He gets dizzy
(dysreflexic?) if he hasn't eaten and the average household does not have a
spare can of Ensure/ProBalance on the shelf. |
|
I just found out that my
favorite performer is going to be at the Marcus theater
on Aug. 10th. Tomorrow I am going to see how you go about ordering tickets
to include a person in a wheelchair. I don't know if you order special
seats, or if you just buy any seat and the wheelchair goes elsewhere (I'd
hate that - he'd be alone). Hopefully I can find out the procedure before
the tickets go on sale. Can anyone in the Milwaukee area shed light on this?
|
Sunday, May 27th
Jake saw the lung doc this past week. Jake has to have more tests -
pulmonary tests. After the tests Jake will probably have a form of
respiratory therapy - that he will do himself, at home. It's a small gadget,
called a flutter (thing)?? He takes a (deep?) breath,
then he puts the gadget in his mouth and breathes out. Jake often has
a lot of phlegm/junk buildup in his trachea (windpipe). When that happens,
he makes a gurgling sound when he breathes. The phlegm also collects in/by
his tracheostomy. That makes a gurgling, whistling sound. :) We have to pull
the phlegm out through the hole. (I know that's gross, but
it's life). This gadget will help him get rid of
the junk. I think we are lucky that it's in his trachea and not his
lungs/bronchus.
The lung doc seems to be decently knowledgeable about sci injuries. Terri
was relieved to observe that. |
| It's been a rather quiet week for Jake. His spasms have increased during
the day. PT person noticed that. But they have decreased at night. PT doc
suggested a dose of Valium during the day also (he gets Valium at night now
- for spasms). So yesterday he was pretty sleepy all day. I think part of
that was because he was at the computer all day. Nothing
else. I tried to explain to him that would make anybody groggy. (I
know :)) |
| Now he is on Baclafen, full dosage, and Valium, for spasms. He takes a
lot of medications. Part of me is alarmed at all the drugs he takes, and the
other part of me thanks God every day that there are drugs to help him. |
| We are very busy trying to make room for the van. Right now we must park
it elsewhere, then go to get it when we need it.
(absolutely no complaints from us - we are so
grateful that we have a van). Last week we had the maple tree cut down. That
was hard because as a child Terri nurtured that tree from a seedling. It was
her tree. Now we need to move an extremely large amount of dirt from the
front yard; then move the gravel that was dumped in our driveway last fall
when we built the ramp. The rest of that gravel is going in the front yard
so we can park a car there. |
| All this is worth it. We are so excited that we have a van. Jake has
wheels! It is wonderful. |
| I want to go to the zoo. So does Jake. Now we can. We just need to find
the time. :) |
Wednesday, May 30th
I think Jake is nearing the end of his NPO status. (it's
nine months now) I think his esophagus is healing. The secretions are next
to nothing - actually we have not had to suction his neck (the
fistula/esophagus/drainage hole, not his tracheostomy) in a long time. The
trach hole still gets gooey at times, but the esophagus hole doesn't. The
esophagus hole is the dark spot on the left side of his neck on his
graduation picture. |
| Once in a while we will allow him a small bite of food - very small. It
doesn't end up in the hole like it used to. And he wants to eat now.
He never had the desire to eat anything before. I gave him a taste of potato
pancake tonight (very small taste) and he wanted more. (which
he didn't get). |
| He still has at least one surgery in front of him in the near future. He
will need a skin graft (or two) for the hole(s) in his neck. The trach hole
will never close by itself. It's been open too long. |
| In a year or so he may opt to get tendon transfers, but that's down the
road a way. |