Subject: Brian Update #8

Sat. afternoon 12/27
Dear Friends and Family,
I did 2 number 6s-no 7--so this is #8.  Brain not as clear as normal!

Where to start???.... In summary, things are going badly--very badly.  Nearly
every side effect possible has hit with a vengence and we're told it's going
to get worst.  Hard to imagine.  Obviously, Brian never got to go home.
Things started getting worse on Christmas Day.  It was clear by that night
that he would not be going home Friday.  Today we were told 7 to 21 days for
his current condition to improve enough to go home.

Brian developed hives.  We still haven't determined the cause--could have been
from the blood transfusion or it may be the morphine.  He is very itchy all
over.  Benadryl has not brought any relief.  

His Christmas morning  LP (spinal tap) went badly.  All the others have gone
beautifully.  Brian initially got upset because it was in the middle of his
now favorite program--Blues Clues.  Drs. said he was screaming from
aggravation and emotional upset.  Stan disagreed and said he never cries like
this unless he is in pain.  Brian said his neck hurt, but drs. ignored him and
said he'll settle down.  He did "settle down", but he was in pain all day and
the morphine did not help.  His mouth, throat and stomach hurt.

Christmas Day visits from the Warne family were nice.  Sara B. and Susan came
over to relieve Sara and Stan so they could have Christmas dinner with family.
Every restaurant in the area was closed and they didn't want to drive around
S.F., so they settled for the cafeteria in the hospital.  At least they were
together.

About 6:00 p.m. Nurse Mary came in to weigh Brian.  He's gone from 37 lbs. to
33.  He has not eaten since Monday.  It was not until he drooled on Mary
during the weighing, that she realized what was the matter with him.  When he
said his "neck hurt" during the LP, he meant his throat.  He had developed
mucuositis--canker sores in his mouth, throat, esophagus and stomach.  As it
turns out he has a very severe case.  This is very painful.  He can't even
swallow his own mucuos without pain.

Shortly after this discovery Thursday evening, he got his first fever.  Got up
to 103. Tylenol got it under control.  Sara and Stan went to Happy House to
get some much needed sleep and Susan did the night shift.

Thursday night was bad.  He got 2 spiking fevers as high as 104.5.  He had
fevers from 12:30 to 6:00.  Two bowel movements during that time soiled his
bedding.  Susan changed the bedding 3 times that night.  During the fevers,
she put wet wash clothes all over his body for over an hour at a time.  By the
time he was covered, the ones put on first would be very hot or dry and
require rewetting.  Tylenol and the wet towlels got his fever down by morning.
He never slept all night. The nurses never helped Susan at all, except to
bring in 2 doses of Tylenol for Susan to give him.  They would disappear for
hours at a time.  Didn't even come in to check his vitals (suppose to be done
every 2 hours), Susan took his temp every 15 minutes.  

Sara and Stan returned to the room Friday morning to find a very tired child.
Itchy, in pain and exhausted.  Drs. decided to take him off morphine (may be
cause of itching) and put him on dilaudid.  They also said not to feed him
solid food--could tear the mucousitis sores and cause infection.  That was not
a problem for us since he has not been eating any food since Monday.  They
will give him all the calories he needs through IV.  

Being tired, itchy and still inpain, Brian spent the day watching tv and
saying "I'll never be able to sleep ever again.  I wish I could sleep."  All
the medications designed to make him sleepy--adivan, benadryl, morphine--don't
work for him.  They wake him up.   The dilaudid didn't arrive until late in
the afternoon.  (We've learned that every change in medicine takes a long time
to actually occur.)

The dilaudid caused Brian to have hallucinations.  Every video scared him--Toy
Story Woody was after him.  Lion King was going to get him.  Rain was in the
room.   Even Winnie the Pooh scared him.  Sara and Stan turned off the tv, but
he still kept hallucinating.  Stan went to sleep at Happy House.  Susan had
gone home and Sara had night shift.  After 8 hours of halluncinations, sara
told the nurse that it had to stop now.  So the nurse called and got
permission to put him on another pain medication. 

In addition to the hallucinations, Sara had to deal with itching, bowel
movements and worst of all 3 spiking fevers during the night.  These went up
to 105 and his pulse was at 200 all night.  Luckily, she did get some help
from the nurses.  He was the sickest child on the floor last night.  Sara was
so exhausted that at 5:00 a.m. she had to call Stan from Happy House to come
help her.

Stan arrived about the same time as the new pain medication. This new pain med
turned out to be awful---he was on it for 2 hours and it made him vomit the
whole time.  This was extremely painful to his sore-filled throat.

Finally at noon on Sat., Brian was given a higher dose of morphine and
benadryl and he fell asleep.  He had been awake since Christmas morning.  Sara
wearily went to Happy House to try to sleep.  Stan is with Brian. Hopefully
all 3 of them are sleeping now.  

According to the drs., we haven't seen the worst yet.  Brian still has his
beautiful head of hair and he manages to smile occassionally.  We marvel at
his strength and bravery.  He says his prayers every night and always says
"bless my 5th birthday."

Prayers. Prayers. Pray for Brian, his drs. and especially his parents as they
meet the new challenges that each day brings. Their faith is strong, but their
bodies are weary.

Love,
Susan