Tuesday 26th October 2004 (Day 28)
Alex woke at 2:30 with a full nappy. It's the first
time in days he had "opened his bowels" as the
doctors say and the poo was flowing. After that he
was wide awake and wanted to play. I left him with
the nurses while I changed the sheets and they
noticed that his temperature was quite high, 38.4C.
He seemed happy enough though and played for an hour
or so in the playroom.
At 10:00, a more sensible hour, the doctors came to
wake him again. This time there was a few more prods
and pokes to find why he had a temperature during the
night. Nothing conclusive.
Joan and David brought Tom in for lunch at the
Thackray museum. Alex and Tom ran around making loads
of noise, happily ignoring our calls to sit and be
quiet. I'm sure one day we'll be banned from going
After lunch Joan and David looked after Alex and Tom
and I went off to the playroom. The doctors came to
see Alex and found that the new long line in his arm
was "tracking". This is where the infection in his
blood has been transfered to the line and the track
of the line is visible on the surface of the skin.
The line needed to come out asap but he also needed
more antibiotics. Alex received the antibiotics as a
high rate so they could be finished quickly and the
At 19:30 the antibiotics had about 15 minutes to go,
we were in the playroom talking to other parents. One
of the other Mums noticed that Alex was shivering, by
the time I had pushed him down to the nurses station,
his hands and feet were blue and the shivering was
really pronounced. His temperature was 39.4C.
In bed, Alex was sick quite a few times and became
very floppy. Nurse Julie attached a monitor for blood
pressure (which was OK) and a probe to measure blood
oxygen levels and heart rate. His oxygen level
dropped to 88% and the heart rate peaked at 205 bpm.
An oxygen mask was placed on his pillow and turned on
high. He was clearly distressed but it was easy to
keep calm since we've seen him in worse situations
more than once.
The on-call doctor came and confirmed Julie's idea
that it was because the infection was being pushed
out of the line and into his blood stream faster than
he could cope with. We still had to wait until the
antibiotics and flush had finished before whipping
him off to the treatment room and removing the
infected line. He was also given a new cannula in his
ankle just in case he needed a fluid bolus or other
An hour or so after the infected line was removed,
Alex's temperature had returned to a more healthy
37.2C and he was asleep. Crisis over at about 22:30.
Wednesday 27th October 2004 (Day 29)
At 2 Alex awoke screaming. There was nothing really
obvious wrong apart from a temperature of 38.0C.
After a few minutes of screaming I took him out to
the playroom to calm him down and give Grace a chance
to sleep. He was given paracetamol to lower the
temperature and after an hour or so he was sleeping
like a baby should.
Even after the late night and broken sleep, Alex was
up at 6, happy and wanting to play. He remained in a
great mood all morning.
Since the cannula fitted yesterday is still working,
the doctors have started him on iv antibiotics again
for as longs as it lasts. There will be no bloods
taken today because this would add to the risk of
loosing the cannula.
At lunchtime, Kirsten and Tom came to play. We bought
a take-out from Thackray and ate it in Eckersley
House. Tom and Alex played at opposite sides of the
playroom while Kirsten and I chatted to other
After an afternoon partly in Eckersley and partly in
Ward 10, it was tea time. Grace, Tom and Alex had a
picnic in the bay. Tom and Grace hit it off. Grace is
the same age as Tom but has had to learn to walk
again after her illness. Tom was encouraging her to
play football in the bay and run around. It must be
the most running she has done since coming back on to
the ward a few days ago.
Grace and Tom were sad when we had to separate them.
I think Tom wants to be poorly and stay in hospital,
from his perspective it must seem really good fun.
Alex did not have his usual sleep during the day so
passed out around 17:30. It was only when the nurses
came to put his drip up for a new round of
antibiotics that he stirred. At 19:00 he woke again
in a good mood and wanted to play. It's now 22:30 and
I've just given him away to the nurses so I can have
a few minutes break. I think the second or third time
I done that in four months. I can hear him crying out
by the nurses station now he's realised it's not his
dad pushing the pram. I'll have a few minutes of
reading after finishing this and then back to the
Thursday 28th October 2004 (Day 30)
Finally managed to persuade Alex to sleep just after
midnight. We sort of watch the last few minutes of a
James Bond film in the playroom before he walked
himself down to the bay.
He was still hooked up to a pump. The nurses did not
want to detach it in the four hours between
antibiotics because the drip could be helping the
cannula to work. If it was removed, next time it's
reattached, it may not work. Unfortunately the
cannula was on the way out and made the pump beep
every few minutes during the night. Alex slept
through it but a loud beep within two feet of your
head that just might mean that life saving drugs are
not reaching your son, tends to keep you awake.
Alex woke when Joan rang at 9. The doctors came in
just after that to fetch Alex to the treatment room.
They looked at the line site again, it looked better.
Blood tests were needed to see if Alex required blood
transfusions plus they would show if he was still
neutropenic. The cannula would not flush and would
not bleed so it had to be removed. Two doctors
searched for other veins for a new cannula or a blood
test but they were unable. Even after Doc Sam
retrieved an infrared light from neonatal that is
really just a bright light that is beamed through the
skin. Sam declared Alex "aveinula" after he could not
find a single vein. Blood was eventually taken from
an exhausted Alex from the drops left when the old
cannula was removed.
Because of the lack of access, Alex has been moved
from IV antibiotics to oral ones. During the morning
his temperature again jumped to 38.4C.
Alex's mouth was swabbed for a sample again because
his tongue was white. The test came back as positive
for oral thrush so he was given flucanosol.
Joan and David delivered Tom at lunchtime. Kirsten
arrived just after. There was a Halloween party at
the Children's Day Hospital, which was very good. Tom
really loved playing bingo! After the games, we went
to Thackray again for lunch with Jenny and Lewis.
The afternoon was spent setting up the playroom in
Ward 10 for the Halloween party that was planned for
the next day. I went for a quick sit down but ended
up falling asleep, which is quite rare for me even
when really tired. Meanwhile, Tom and Lewis ran riot
around the ward. Alex just tried to keep up.
Alex fell easily asleep at 20:00. We tried to wait
for Tom to fall asleep before starting a horror film
about sharks but at 22:00, we started watching it
anyway. Tom was asleep within a few minutes of it
After the film, at midnight, I carried Tom down to
Eckersley House. He woke when i tried putting him in
pyjamas and screamed to be taken back to hospital, to
Alex and Mummy. After three hours, yep three hours,
of trying to calm him, telling him off and ignoring
him, the screaming became so loud that I took him
back into the hospital. He stayed with Kirsten in the
little fold-out bed next to Alex's cot. I could not
sleep until 5 because I felt back about shouting at
Friday 29th October 2004 (Day 31)
At 09:30 I dragged myself out of bed and up to the
ward. Tom had just had a bath because he had wet the
bed while sleeping next to Kirsten. Alex's
temperature was high again at 38.4C. Kirsten looked
nackered (but still beautiful of course), Tom had
squirmed as three-year-old's do all night.
Alex and Tom helped Cath again to prepare the
playroom for the party. Tom found he liked towing
Alex round in the trailer of a new tractor.
Since the blood taken yesterday clotted before being
tested, Alex had more taken with a heal-stab.
The Halloween party started after lunch, with cakes,
drinks, bowls of sick and pools of blood. Trick and
treating by the kids on the staff ended up with
running battles - nurses and kids alike armed with
water filled syringes. Alex was a little lost in the
mayhem. He was dressed up in a sheet, apparently a
ghost. It was great to see some of the kids who had
not been happy or end out of their rooms for weeks or
months having fun. Are wheelchairs like glasses? Your
not allowed to hit people with glasses, can you
squirt water at kids in wheelchairs? The nurses
thought so. It's OK because the kids squirted back.
During the battles and the noise and the mess, Sam
came to give us Alex's blood results. Alex has a
neutrophil count of 1.9. Up from 0.5 a few days ago
and 0.01 last week. Doc Tim has said that he can go
home on Sunday. We can go home. WE CAN GO HOME. Did I
say, we can go home on Sunday.
Only one condition - Alex's temperature must stay
below 38C till then. There's only one place to go to
celebrate in hospital, the cafe. Tom and Alex ran
around like little boys should. After that Tom and I
went home for the night. It almost felt like home,
different now we may be able to properly consider it
Saturday 30th October 2004 (Day 32)
A day spent waiting. Alex needs to keep his
temperature down. It did tease us by going up to
37.5C, which worried the docs. It's a pretty nasty
infection that Alex has had, the docs need to be sure
that he will not have one of those turns that have
happened a few times over the last few weeks.
Airedale hospital is near enough but it is not
equipped for AML patients so we need to be within
spitting distance of St James's for another day or
so. Even when we are home, Alex will need close
observations. How do I tell work that I need to be
near Alex for a while longer, when they have been so
Sunday 31th October 2004 (Day 33 - The day we
It should have been a really early start but our
teenage 3-year-old would not get out of bed. In the
end I had to dress him in bed and lift the sleeping
beauty into the car.
We arrived in the hospital at about 10:00 and did a
very quick turn around since Kirsten was ready and
waiting. In fact if we had been any later, I'm sure
that they would have been waiting in the car park.
After lunch with Joan and David, we walked up the
road to Polly's Halloween party where both Tom and
Alex had a thoroughly grand time. This was perfect to
tire both of them out and the whole of our family had
an early night - at home.