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April 26, 2001
My son was due for chemo last Tuesday - and because it's
that IV stuff that doesn't clear (because he just can't be relied on to
be even a normal cancer patient) - he requires IVs until it does clear.
We had planned to put him in the hospital and keep him until he was off
the IV.
On Monday night I cleaned and packed and thought
of tapes and stuff (clean clothes) and got my own stuff together - knitting
and books to read, coffee, low heeled shoes.
The plan was - take him in - check him in - and go
to work. Stay with him in the evening - just like before, until about
11PM and then go home. Once home, I would take the chance to scrub down
his room. Get the Oreo cookie crumbs out of the rug. The cat hair off
the drape. The dust bunnies out from under the bed. And Clorox the bathroom.
We were due to the hospital by 10AM - which means
that we will actually be there slightly after 10. Depends on traffic.
Depends on the horrible parking lot they have for Children's hospital.
Depends on my dragging the heavy wheelchair out to the car. (The chair
isn't so bad - but he's gained weight!) We have no ramp. That step at
the door is a killer. Thank God he can now assist in turning the wheel.
I still feel my back snap when I have to drag him up and in. Must get
him walking.
I was sitting on my bed contemplating my added spare
tire around my waist (30lbs of it) and reaching for my shoes when the
phone rang. The email last night had said that his counts were good. So
why was the doctor now speaking to me?
Because they have no beds.
You've seen this in the news. The medical care system
is slowly toppling as we get more and more people and are not building
medical centers to keep up.
OK. Now what.
Well - we see how far we get at the day hospital
- they close at 10PM. So we go in, and it is a miracle but I find a parking
space in under 15 minutes. I take him up, with his bags (we wanted to
sort photos if he felt OK) and I had a Pasta Anytime packed in there since
hospital food cannot feed a 227lb boy. Yes, he has also gained weight.
He tells me that he is busy gaining weight so that
when they whap him next time he has weight to loose. Well, it's better
than my excuse.
I get him settled - we wait in the hallway since
he is still in the wheelchair and the waiting room is dangerous (too many
people is not good for him) and there is no room with all the strollers
and other wheelchairs. In the hall, I like to rub his head. His hair is
dark and getting thick - it is baby soft and lovely to touch. He sprongs
my work badge in retaliation.
We go to the day hospital and I get him settled.
The doctor has to rub his head too - and uses the excuse that she is "checking
for lumps". Wink. Wink. Actually she does have to check for lumps, in
all the places lumps can be. The top of his head isn't one of them!
The other doctor comes in and she has to check his
head for lumps too!
He fusses about this, but I see the little grin.
He likes attention. HE also grabs my badge if I get near.
We had spent the weekend seeing a movie (Crocodile
Dundee in Los Angeles - a light movie - we are fond of Dundee) and then
spent Sunday morning at the Team in Training race in Coyote Point - on
the bay. He was in his wheelchair and when we got there it was soooo windy.
They dressed us in Sweatshirts and put a cap on him and we watched the
bike - to - run part of the race - the swimming had already happened.
We stayed from 9:30 to 1:30 for the pot-luck - when it became obvious
that his feet hurt. He is now slightly sunburned and looks good. The doctors
all say so.
Today is the day they do a bone marrow check and
spinal - he has a hard time. They sat him on the edge of the bed - draped
him over a rolling table. I stood in front of the table - patting his
arms and keeping the table from rolling.
They go in three times! At one point of course they
were adding drugs and he was whimpering.
He reached out and grabbed me - one hand on each
side of my more than ample backside and pulled me against the table. I
could tell when he needed drugs or felt the needle because he would squeeze.
(I swear I have finger prints on my backside.) He wasn't too drugged to
suggest the cute nurse take my place --- no - we won't go there.
They finally get the bone marrow and he finally gets
to lie back down. They hook up the IVs - because he has to have a certain
level before they can start the other poison. He is groggy - he will probably
not do his photos until later.
He still is not walking well from the last set-back
and that concerns me. I hope this goes fast.
I went to work - wrapping up my part of a major project.
I call about 4:30 and they tell me it will be late. They tell me to come
back at 10PM and we shall see how his levels are.
Well, I took advantage and hit the grocery store
and then Target on the way to the hospital - got there by 7PM. I had movies
(six of them - some for him - some for me). I made his pasta.
And they told me he needs to take an IV home. Portable
pump.
They show me how it works. Give me directions. Give
me needles (heparin and saline) and a 24-hour number.
The IV bag will run 16.5 hours. Too bad. 24 would
be better. I stay there until 10:30PM. We have computed when I can get
back. I have a meeting tomorrow I'd like to make.
There is one hitch.....the pump alarm is a very low
sound - so someone must watch it. Translation, he gets to sleep with me.
The pump on the dresser. A fifty-foot cord run to the ground-fault interrupter
circuit for isolation.
A large child in your bed is an interesting occurrence.
I don't need any covers. He radiates heat. This is hilarious. He likes
to cuddle anyway.
Needs must.
We survive the night and in the morning I get him
packed up and take him into the office - to the place where the meeting
is, and plug him in while I am on the phone conference call. Then we go
back to the hospital.
And guess what? It is not a blood draw and decision
- it takes 2-3 HOURS for the results of the blood draw. So they switch
the bag and we wait - sitting that whole time. And he must stay on the
bag. They do not have any beds in the day hospital either. In fact, they
are a virtual zoo.
So we go home again after we get a new bag and he
sleeps with me again (great for my hips - the warmth that is) and now
we need to get to the hospital the next day at the great hour of 8AM.
Because the bags are not 24-hour and so you get to come earlier and earlier
--- until you have to hook up two bags in one day to prevent running out
between 10 PM and 8AM - when the day hospital is closed. The bags are
heavy little suckers - which makes rolling him into the house an ordeal
(adds about 40 lbs to his weight and the chair - the rubber wheels creak).
So does my back.
By now it is Thursday and I am hysterical about not
getting to the office as much as I want to - so they agree to draw blood
early - at 10AM instead of 11:45 - and we get his hearing aid adjusted
(at last) and his blood drawn and a new bag and go off to my office. It's
take your kid to work day. The hearing aid had waited for 2 weeks to get
adjusted and I was getting annoyed. Very annoyed. Threatened to return
them. If I pay $6,000 cash - I demand better service! Clinic B (audiology)
is a worse zoo than the day hospital.
Once at work, I plant him at the UNIX station in
my office and go to a meeting.
Someone grouses that he should not be there.... that
won't work - not today. It's called discrimination...... He's a kid -
it's take your kid to work day. He's here. He actually naps on the floor
and gets back up to the wheelchair all by himself.
He needed a restroom while I was at the meeting but
used the water bottles and Gatorade bottle he had in the office - the
Gatorade bottle routine has become a standing joke. At home, he fills
the one urinal we have and then uses a Gatorade bottle - fills it and
puts the cap back on and sets it down like it's Lemon-Lime Gatorade. And
waits for me to miss it. Thinks this is great fun. (I can't tell - he
swears it's a different color.)
I got back to my office to find three little bottles
all in a row. And he's smirking.
Just what I wanted.
I get a free head rub.
I finished my emails, messages, phone calls, etc.,
dumped the bottles and we left back for the hospital. Again.
He can be disconnected!!! They do this out at the
desk - with the governor's security guard (6'6" I swear, complete with
FBI ear-piece) standing by. Some team was in watching the day hospital
operate - I said, "Gee, studying the fact we need more beds?????"
Good!
Now unplugged - he gets to go to his room for the
night. It's easier to roll him into the house.
I change his bed.
He is refusing to shower again. I forget when last
I got him there - Monday?
He takes almost all the other meds (part of the cycle
of poisons) but refuses the 6MP again. He actually skipped the dose. He
does this one dose per session and drives me nuts. He gets surly. And
rude. And obnoxious.
He's too tired. Too hungry. Too grumpy. The drug
requires that he not eat for 2 hours and then not for 1 hour after. He
gets low blood sugar and it goes down from there.
I nagged for 4 hours and then I give up. I am already
under stress, have an inhaler and have asthma. Stress asthma. I can only
push so hard.
After breakfast on Friday I get a commitment that
he will take the pills at night. OF course he had earlier promised to
take a shower.
I am so tired by this time that I take the day off,
stay in bed and read "The General's Daughter" cover to cover. Noting the
differences to the movie. (Great movie - great book). I only got up to
feed him and dye my hair deep red.
Felt like it.
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