Thursday 15th July 2004 ( Day 10 )
Woke at home with Tom snoring in my ear at about
6:30. Got up and started to pack all the things to
take back to hospital. It's quite surprising the
small things you miss when away from home. When going
on holiday there's time to plan, Kirsten usually
packs and you know when you'll be back. In hospital,
there's not much to amuse and there always seems to
be something that was forgotten or has gone missing.
Tom woke about 8. Before he started to move, the only
part of him visible was his right foot poking out
from under the covers. He just wanted to watch Tarzan
On the phone, Kirsten sounded very tired since she
and Alex had had a rotten night. I dropped the idea
of spending the day with Tom, took him straight to
school instead and drove back to hospital. I raced up
the stairs, ran down the corridor and on entering
Room 18 found Alex asleep and Kirsten quite relaxed.
I could have spent the day with Tom after all.
Alex's temperature stayed high all day, usually above
39C but dipping after doses of Calpol. Only out of
bed for a bath and a try at something to eat. He has
been sick a few times but managed to keep down a
Andrew and David came to visit late afternoon but
Alex was very lethargic. Still quite happy but not
enough energy to play.
Kirsten followed David and Andrew back home. They
left at 19:00. Kirsten did not want to leave because
Alex is still so poorly but she needs a break.
It's not 20:00 and Alex has finally finished playing
slowly with his wooden animals and closed his eyes,
We're just waiting for a platelet transfusion to
arrive. They are hoping to beat his infection soon.
The nurses sound a little disappointed that his
temperature hasn't dropped yet.
It's not 22:00 and Alex is back in a fitful sleep
after observations. He keeps retching in his sleep,
sometimes waking. The nurse has given him some
anti-sickness drug. He will not take his dummy, it
makes him retch too. Poor little thing, he just wants
to sleep and play with Tom in the morning.
Friday 16th July 2004 ( Day 11 )
Alex woke every hour or so. Sometimes his dummy would
settle him but he still does not like it in his mouth
for long. He's had more Calpol to pull his temperature
down. Early morning it was at 39.5C.
We got up at about 8. I suspect Alex has been awake
for quite a while since every time I looked over, he
was looking at me. He did not want any of his
breakfast but has drunk 100ml of his milkshake during
He was lethargic and did not want to be held but I put
him in the pram anyway. A few walks up and down the
corridor and he's much brighter. Even interested in
the pictures and the fish tank.
He's had a cool bath. A bit shivery, not from the bath
but from the antibiotics. He was dancing to a tune
from one of his toys and it looked quite funny as he
jiggled and shivered at the same time.
Alex is sitting in his cot, slowly playing with his
toys. Not much energy but a will to use up what he's
17:00 Alex has been to play in the playroom a few
times, despite having stomach problems today. Lovely.
Most of the day he's been trying to sleep but even the
smallest noise and he's looking around again, usually
The docs have recommended two changes today... first a
new antibiotic that targets infections on his Hickman
line. Secondly a feeding tube, which nurse Rachel is
not keen to insert. It has to be done without pain
relief so that Alex swallows it and it does not go
into his lungs.
It was done. He kept the tube in for about 15 minutes.
A quick flick of a finger and it's out. The next try
was by another nurse. This lasted well into the night
before Alex pulled it out.