Friday 23rd July 2004 ( Day 18 )
Kids were setting off bangers outside Eckersly House
between 02:00 and 03:00. Not the most unstressed
night I've every had. Alex slept until nearly 11:00.
It looks like he had a very quiet night. Kirsten and
I went for breakfast, read books, played on the
computer before he woke. I was sat at the end of his
bed and happened to glance up for which I was
rewarded with a huge smile, even though he had not
moved. Alex must have been staring out of the door
watching the world (or corridor) go by.
Joan, David, Andrew and Tom arrived about 13:00,
Nardia, Siobhan and Barbara a little while later.
Alex has eaten two small yogurt's today and had a
little juice. He's also munched a few cheesy crisps.
Kirsten is feeling very down. She has a bit of a
temperature and a headache.
Tom played in the playroom for hours. We chased up
and down the corridor on scooters. Alex was pampered
by all the visitors until a little tired, they all
left. Tom is staying here today - a last minute
decision. We played for a while longer and at about
19:00 Tom and I zoomed off to Eckersly House as Alex
The lift on the way down stuck on floor 3. Tom was
sure that the ghost had broken it.
Saturday 24th July 2004 ( Day 19 )
Today started with Tom prodding me on the nose. A
quick look at the clock confirmed that it was too
early - 7am. Tom was really quite desperate to see
Alex again. I did not want to wake Kirsten or Alex
this early - if they had had a good night or if it
was a bad one and Alex had gone back to sleep, I
would be in trouble if I disturbed them. So Tom and I
went downstairs to have breakfast. Tom immediately
trashed the Eckersly playroom. After an hour or so we
quietly (as we could with Tom telling everyone about
the ghost in the lift) went back in the hospital and
straight into the Ward 10 playroom.
After an hour or so, I snuck into Room 18 to get the
MagicSand for Tom to play with. Alex and Kirsten we
wide awake and waiting for me. Waiting, it turned
out, since about 7. Kirsten was feeling worse so
after a while she took Tom back home.
Alex continued playing for a couple of hours but he
seems tired but will not go to sleep. He's very
moody. No food and only a couple of sips of drink. At
11:30 he finally fell asleep and stayed that way for
three hours. He woke still moody. I tried playing in
the playroom, drawing, reading books, showing videos,
walking the corridor in the pram, with the baby
walker and in the baby car. He was happy only for
seconds at a time.
His DF118 sedative is now given at 6 hour intervals
instead of 4. I don't think his moods are pain
related, like they were a few days ago. Maybe he just
needs more that two rooms and a corridor to view.
When I took him out of bed this morning, the drugs
line was not attached so the antibiotic was dripping
onto the floor. Not much they can do about it so he
just has to miss a dose. Luckily, the Hickman line
was clipped off so his feed and blood was not
draining out. That could have been a serious problem.
Kirsten is staying at home for a few days since she
has a really high temperature now. I was planning to
go into work on Monday and maybe Tuesday but it's
more important that Kirsten stays away if she's
infected. She also needs to have her energy levels up
to look after Alex. After an early evening sleep,
Alex woke at about 20:00, bright as a button and
played in his cot until nearly midnight.
Sunday 25th July 2004 ( Day 20 )
Alex had a very restless night. Waking every couple
of hours to have diarrhea or be sick until 07:15 when
he was really sick. I asked for his feed to be
stopped in case it was that making him retch. A few
minutes later he was asleep. I thought I'd catch a
little shut-eye before going for breakfast and a
shower. I was woken but Alex throwing toys out of the
cot at 09:30ish and then could not escape. His
temperature during the night jumped up and down
between 36.5C and 37.7C.
We played in the playroom for a while but Alex was
not happy. His tongue looks really sore with little
bumps all over it. He cannot stop dribbling as if
Just before 11:00 Alex went back to bed and fell into
a deep sleep. I made a break for breakfast at
Eckersly House. Just as I was finishing my mobile
rang, it was David to say he and Andrew were in with
Alex. Alex stayed asleep for another hour or so and
then woke in a bit of a bad mood. He quickly became
tired since while all three of us joined him to play
in the playroom and driving up and down the corridor.
I managed to get him back to sleep at about 16:30,
just after David and Andrew left. He woke after an
hour or so. His three lines were removed for a while
so we went for a long spin up and down the corridor
to which he giggled and giggled.
The doc and consultant came to see him to judge
whether to change his antibiotics since his
temperature has stayed a little high. The conclusion
was to wait to see if it went over 38C and then
culture his blood and change the antibiotics.
His lines were re-attached at 19:00 so we put on some
music in Room 18 and he danced away in his cot while
trying to catch a half inflated balloon. His
temperature is down to 36.2C, this should mean he's
feeling a bit better.