Tuesday 19th October 2004 (Day 21)
Alex woke just after midnight and was really
unsettled so I quickly took him out of the bay. I
told the nurses that I did not want to disturb Leah
and the other kids just to be told that Leah and her
dad, Andy, were down in the cafe having chips. Alex
and I spent the next hour with Andy, Leah and the
cafe night staff, who gave us all free drink and
We had a nice sleep until 5 then back into the
playroom for an hour. Alex then slept until 10.
The cannula in his arm lasted all day. He ate well
during the day. The blood counts still right down.
Alex was really glad to be back on his toes again
after a weekend of needles in both feet. It's really
nice to see that everyone is cheered by Alex stamping
up and down the ward with a big grin on his face. A
new trick of his is to blow at the cartoons hanging
from the ceiling in the playroom and corridor, a
really cute baby blow with a big pout. It's
infections and soon has most people around him
pouting and blowing in different directions. If I
capture it on film, we could make a packet on You've
Alex was not at all sleepy until 23:30, even then I
had to have him on my lap for a while. Every time I
put him in the cot, he pulled at the cannula, he now
knows that this gets attention fast. I don't want him
to have to have another. Antibiotics, transfusions
and blood tests will be required for a few days yet.
Wednesday 20th October 2004 (Day 22)
Alex woke and started throwing things at me before 5.
The little git was smiling.
During the night he had the antibiotic vancromycin,
which needed to go through the pump at quite a high
rate. Unfortunately the pressure caused the cannula
in his arm to leak and eventually stop working. The
cannula had to be removed.
It was a while before a doctor was free to put
another cannula in so we went to the playroom. During
the last few days Alex has developed a nasty habit of
head-butting things when frustrated. He does this
without holding back and there are quite a few
bruises now. If he's in the pram, the side bars are
the target, when carried, it's my head that receives
the brunt of the attack but when crawling or walking,
he will crack his head on anything. It's difficult to
stop the first one. I remember Tom doing something
similar and I hope the habit is as short lived as
Doctor Tim tried for about half and hour to find a
good vein for a new cannula but the layer of baby fat
on Alex makes it very difficult. Alex had a hot bath
to dilate the veins and then back in the treatment
room for another go. The only available vein was in
the bottom of his ankle, the end of the tube pointing
down past the arch of his foot. The bottom of his
foot had to be padded like a platform shoe to make
sure that the cannula lasted more than a few seconds.
While the needle was inserted, Alex screamed like he
always does in these situations (understandably) by
then suddenly fell asleep in my arms. Worrying but it
made the job slightly easier. He slept for over an
Cormac, Belinda, Jacob, Kirsten and Tom came for
lunch. Kirsten stayed with the sleeping Alex while
the rest of us went for lunch in the Thackray museum.
During the day, Alex had a few spontaneous nose
bleeds indicating probable low platelets. The new
cannula was not releasing any blood so Alex had a
heel stab. The bloods did show low platelets but not
low enough for a transfusion.
The vancromycin antibiotic has been stopped because
the cannula will not take the flow and he should not
need the general cover since the meripenin fights the
infection from the Hickman line.
After everyone had gone I tried to tire Alex out but
it's difficult when he can't walk on the cannula in
his foot. At 21:00 I needed a little break so I put
Alex in his cot with toys, dummies, juice, biscuits
and books. I was determined to have an hour to
myself, Alex could scream, cry throw things but this
hour was mine. There were no nurses available to look
after him so I had to sit by the cot. After about 15
minutes, Alex had thrown everything out of the cote,
including his deflating pillow and blanket. Once left
with an empty cot, he stood up and started
head-butting the metal side very hard. By the time I
had put the side down Alex had four big bruises and
as the side was lowered he hit the bridge of his
nose. Only a little blood but a nasty red bump. So
off we went, back to the playroom where we played
Thursday 21th October 2004 (Day 23)
During the night, the pump was occluded dozens of
times, which meant that the cannula was now working
properly. It needed to work until he could go for a
more permanent replacement. The doctors were
reluctant to put a permanent line in because it was
be seeded by the infection that plagued the Hickman
line and it would need a general anaesthetic in
theatre to fit. Most kids would stick to the
cannula's in this situation because there's only a
few days of antibiotics to go. Antibiotics are due to
finish on Monday.
At 8 Alex woke. The cannula was still working for
antibiotics in by no blood out so the doctors
prescribed a platelet transfusion to lessen the risk
during the operation to fit the long line. Half way
through the transfusion the cannula started to leak
then failed all together.
Alex's NG feed had stopped at 3, ready for
nil-by-mouth 6 hours before the operation. His bed
looked like a murder scene - his pillow had blood
from his nose bleeds, the NG tube had also leaked,
emptying the contents of his tum onto the rest of the
Alex went to sleep at about 13:00, I sat down, opened
by book and the doctor came in to say Alex would be
going down the theatre soon. Sods law prevails.
It was in fact about 30 minutes before they were
ready, during which time Joan and David arrived.
David went to Thackray to grab a take-away for us
all. Joan and I took Alex down to theatre while he
was gone. Alex was given gas to make him sleep and we
were told that it would be about half an hour.
After an hour, David and Joan needed to get back for
Tom and the dogs. Five minutes after they left
Kirsten arrived. After two hours we were a little
worried and had to ask Doctor Tim to check with
theatre. They were having problems finding a vein to
fit the line and it was taking much longer than
expected. A little later we were called to collect
We took Alex down to the cafe for tea, just before he
was due antibiotics at 18:00. Alex was in grand form,
marching all over the cafe, still a little drunk from
the general anaesthetic. He is now known by name by
so many people around the hospital, including the
cafe staff and loads of patients. It's funny how many
time "Hello Alex" is called just in a quick trip to
Just after that, I abandoned Kirsten and Alex to head
home for a long sleep.
Friday 22nd October 2004 (Day 24)
Kirsten managed to get him to sleep at 21:00ish and
he slept well until 9. The new line is working well
and there seems to be now after effects.
I stopped in after visiting work. Alex was asleep but
we received his blood counts, after a big increase on
Wednesday I was hoping for another big leap today but
it's gone down again. So much so that Alex may need
more transfusions soon.
Alex has been neutropenic for three weeks now. The
longest yet, even longer than the last cycle where he
was in and out of PICU. We were told that the side
effects would last longer each cycle but it has to be
time to recover now. Hasn't it?
Kirsten told me that she and another Mum, Jenny, were
chatting while Alex and Jenny's 6 year old, Lewis
were playing in the bay next to the beds. Lewis ran
off to the playroom followed a few moments later by
Alex. Kirsten and Jenny looked out of the bay to see
Alex toddling after Lewis calling loudly. Alex
stopped at the treatment room, (the one he hates
because of all the hours of needles in there) and
started clapping. A new toy has been installed in
that room, a spider that drops from the ceiling on
someone clapping then slowly climbs back up. Alex was
clapping as loudly as he can, which was not loud
enough, to make to spider drop. For a while, that
room was just a room like any other.
During the night Alex had pulled out his NG tube. The
nurses put another in during the evening but it did
not work. So did a second. So they left it out,
planning to try again in the morning.
Saturday 23rd October 2004 (Day 25)
I called Kirsten at 9 to find how Alex had been.
There had been a new arrival in the wee hours and the
nurses had to turn all the lights on and change the
bed. Alex slept through it but Kirsten was woken. It
took a few hours to go quite again, just before Alex
woke, bright and breezy. Poor Kirsten.
Tom and I came in for lunch. We are now regulars at
the cafe in the Thackray Museum. The manageress even
knows us all by name. Alex was in very good spirits,
he ran around the cafe and shop as if he owned it.
He looked odd without his NG tube. It's been months
since he's not had one for so long. Just a bald baby
with a bandage on his arm. Part of his poorly
identity has been taken. He went without his
overnight feed but he's been drinking the special
milk drink from a bottle.
A new NG tube was fitted later in the day.
Sunday 24th October 2004 (Day 26)
I brought Tom in for lunch at Thackray again. We also
took a very quick trip around the museum. Quick
because we did not want to spend a long time outside
of the ward in case Alex was due any medicines. His
temperature was a little on the high side so we
needed to closely monitor him.
When we had eaten and arrived back in the ward, Alex
fell deep asleep. Kirsten went home for some well
earned rest. Tom and me in the playroom and Alex who
should have stayed asleep until Joan and David
arrived. Unfortunately Alex was awake 20 minutes
after Kirsten left and Tom started to get tired and
ratty. Four hours of trashing the playroom with other
kids and I was ready for a rest. Luckily Joan and
David came to the rescue. Tom really did not want to
leave but Alex and I walked him down to the car and
he was asleep before they left the car park. Alex was
really happy and lively until about 20:00 when he
just dropped. No dummies needed just another deep
Monday 25th October 2004 (Day 27)
Thirteen and a half hours sleep. Alex hardly stirred
the whole night. At 09:30 the doctor came to wake
him, even shining a light in his eyes to make sure he
was OK after such a deep sleep.
We were hoping to go home today but his temperature
was still up in the morning and the wound from the
Hickman line still looks icky. The blood results came
back around lunchtime with the first good leap in the
white cell count. After three weeks this bit could be