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Wednesday, August 8, 2000
I threatened to call this story Twist and
Shout. The Drs. know why.
My younger son is having more surgery
tomorrow - a biopsy of the lung (they have to collapse one lung) to find
out what fungus infection he has. He has a red rash all over his body
(drug reactions) and edema (swelling of the arms and legs) from the IV
fluids - they gave him albumin today to correct that somewhat. The fluids
are leaking from his veins. This would be corrected when he can eat and
when he can walk around. His nose is almost white and cold (circulation).
He shakes - I had them get a warm blanket
- the anesthesiologist said that the IVs are at room temp so they bring
the body temp down - why he gets cold - and his circulation is off since
he doesn't get out of bed.
The rash is receding the way it arrived -
from the top down. His face is beautiful - and his shoulders are getting
clear. The rash goes to the soles of his feet.
He threw up - from the chemo they did Monday.
Having been in the treatment room for 2 1/2 hours with him, holding him
up while they tried to get the needle in the right place (three doctors
- several attempts) and then rubbing his feet while they tried to do the
bone marrow draw. The woman doctor wasn't strong enough to push the needle
into the bone (he has hard bones) so the man had to get up on the step
stool and push it in - I HEARD THE NEEDLE GO INTO THE BONE!
He felt the first attempt - it had taken so
long to do the first step - the spinal - including sending to the clinic
for the doctor who was successful the last time - that the medication
had worn off. They were stepping fast because he cried out followed by
Mother's crying out. Mine was more upset than pain - and I can be loud.
He is NOT supposed to feel it that much!
I know he wasn't out enough because he was
still coherent.
(I can look very tough when I want to - I
raised two teenaged boys! Duck when Momma's mad!)
After this adventure, we wheeled him back
to his room - and his bed was broken. It would not rise up. So we played
hide the bed and moved the bad bed out to the hall. Put him in the hall
first, moved other furniture around - including the potty seat he does
not fit - and took the room's second bed to his place, then rolled him
back and rolled him onto the second bed.
At the last moment I realized they had forgotten
that he has a sheepskin and a foam pad - it was the sheepskin on the other
bed. I grabbed it. I paid for this. Or will be.
The padding is for his back - which is sore
from laying on it all the time and sore from the shaking and sore in general.
The shakes from the fungal medication are
so severe that it takes Demerol and Morphine to stop them.
He is only taking water by mouth (he had some
grape juice and it is what came back up). Yesterday he at least was drinking
grape juice over ice.
The IVs are taking care of nutrition - after
he first lost 30 lbs.
He hasn't been up much in two days.
I think the Mucositus (spelling?) is clearing
up - he's throwing up dead tissue clumps in the fluid - it is a side effect
of the really low blood counts when they did the massive chemo to start
all this. His mouth is healing - so he may be able to start taking some
Boost or Ensure or the protein drink - I hope so.
We finally have the Demerol sequence down
for the fungal medication - 30 minutes in and 1 hour and 15 minutes in
- it is a two-hour infusion through the IV. Everyone suffers who has to
have this medication - the shaking is a common side effect.
This poor kid has been through so much and
he is so good. I took pictures of the IV trees - a virtual forest. I can't
keep track of the bags - takes computer consoles to track the type and
speed. He has two IV lines - one a chest port and the other in his arm.
The only time I get to hold him is when I
am helping him stand up (to pee) or when I am holding him on the treatment
table when they are doing the spinal.
This is getting very trying - and I have to
teach a class next week - m-t-w and will be teaching every other week
from now on (Advanced Chip Synthesis). My older son comes in to spell
me on Tuesday nights. Some days I am cross-eyed and stumbling. I have
backed into poles in the parking garage twice and almost removed my side
mirror. So far I have survived the Dunbarton bridge.
Monday after the spinal et al, I stayed for
the Anthro fungal stuff that had been delayed - I went home at 4AM - slept
1 1/2 hours - went to work. Tuesday, I stayed until 7:30, then left my
other son in charge, went home (and was supposed to go to the gym). I
ended up in bed after settling the animals - and have no memory of laying
down at about 10PM until the alarm went off at 6AM.
Now it's Wednesday and I didn't do the gym
tonight either.
Not good - I really need to get there.
Because while I sit and baby-sit my son, I
eat peanut butter and crackers, more coffee and soda than I should, and
hospital cafeteria food, ice cream and chocolate bars. And the occasional
frozen food entrŽe carried in a warm suitcase.
In short - I fell off the diet truck.
And I will pay dearly for that when I stand
up to teach for 3 8-hour days!
I have promised myself to get to the gym on
Friday.
I really have. [I went in the morning.]
I am groggy from laying around and watching
him sleep.
I read Black Notice (Patricia Caldwell - murder
mystery) - good book - I've read the whole series.
Then we get the news - body parts in five
duffel bags, thumbprints on doors, three bodies in the bags, double murder
earlier - and it's the boyfriend!
Gak!
Bad as the book!
Guess I'm glad I'm single!
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