Friday 3rd September 2004 ( Day 8 )
No jumping out of bed ready for the playroom this
morning. He has not really completely woken all
morning and most of the afternoon, just sitting up to
be sick every few hours. Some of the time he just
looks around but mostly he sleeps.
My Mum and Dad came in to give me a break during the
afternoon. Kirsten, Joan, David and Tom drove down
south to go to Sally's wedding but visited on the
way. Tom looks so much like a bundle of energy
compared to little Alex who just wants to sleep.
Alex is still being sick and dribbling loads, maybe
even more dribble than sick. The nurses are sure that
what his is throwing up is dribble so have fitted a
bile-bag to his feed tube. This should allow his tun
to empty of the stuff he's throwing up. He's not
having any food or water to in theory the tum would
be empty. Fluids are being replaced by intravenous
My Mum looked after Alex overnight and I slept in
Eckersley. Alex was still poorly overnight with
diarrhea and vomiting. Poor Mum was thrown in at the
deep end with one of his worst nights.
Saturday 4th September 2004 ( Day 9 )
Overnight Alex was so unsettled he has been put onto
morphine. The dose has been increased this morning
because he was not happy. There is a balance between
unconscious and pain relief that has to be reached
with the morphine level.
Alex's haemoglobin level has dropped again to 6.2 so
he's had a blood transfusion. The blood cultures grew
several bugs that would have initiated in his tum.
This means that he will be in till Saturday. They
increase the antibiotics protocol from 5 days to 7
when things are grown in culture. Nurse Neil
explained that since he is neutropenic, instead of
the stomach lining protecting the blood from bugs,
it's letting them through. Nothing much we could do
about it, especially since he's swallowing loads of
Kirsten is happy to be at her cousins wedding but not
happy to be so far away from Alex. If sure Joan,
David and Andrew and the same mixed feelings. Kirsten
keeps ringing on the very expensive Patient Line
phone. Alex being at his lowest for weeks cannot
At lunch he lay for a while smiling at my Dad and
pressing buttons on a few toys. During the afternoon
Alex still did not have the energy to sit-up, even
with the blood transfusion. Early evening he did
smile a little but we had to work hard for it.
Watching the concoction of drugs injected and dripped
into the tiny figure, it's surprising that there's
any room for blood at all.
Sunday 5th September 2004 ( Day 10 )
Alex never really went into a deep sleep all night.
Every breath was laboured and each exhale was a
grunt. Around midnight, I had to ask for a doctor
because Alex was crunched up in a ball with white
knuckles and curled toes, obviously in pain. He was
not quite screaming but the loud "errrr..." with
every exhale made his feeling clear. The doctor sent
for the registrar who was a little worried that he
may have a blockage in his digestive system that
would be the cause of the pain. We had an x-ray at
1am, a portable machine was brought to his bed as I
was out calling Kirsten to say what had happened so
far. The x-ray showed no obvious problems. By this
time, to keep him still the nurses had trebled his
Over the next few hours, Alex was so restless that he
rubbed the sticky holding his feed tube in place. It
finally stuck more to his pillow than his face at 6.
We left him a while to calm down before moving him to
the recovery room (first time out of the bay in three
days) and putting in a new tube. When-ever a new tune
is needed it seems to be Nurse Rachel that is looking
after us and it's definitely her least favourite job.
First try he was sick and the tube doubled back so it
was going in and out of the same nostril. Second go
and he was sick three times. There was a little blood
in the vomit but I'm told this is probably from a
combination of a new tube, very low platelets and
lots of vomiting.
After the trauma of a new tube and being so sick, I
put him back into bed and he slept the best sleep in
Dad and I went for a walk in Raoundhay Park and ended
up watching the cricket and eating ice-creams. By the
time we arrived back Alex had been x-rayed yet again
to see if there is any infection in his chest. There
are shadows on the x-ray that most likely are
infections. That means he has infection in his lungs,
tum and gut, plus nappy rash. No wander he's not very
Kirsten, Joan, David and Tom drove straight to see
Alex from Sally's wedding. Kirsten and I made plans
for Alex's care for the next week. Just after that
Kirsten was vomiting, Joan and David took her home to
recover from what is most probably a dodgy prawn
sandwich. So much for plans, Kirsten was going to be
on duty over night.
Alex vomited up his new feed tube so has to have a
new one. It is necessary to have a line to drain his
tum of bile and stop some of the vomiting.
Unfortunately his platelet count is very low (27 at
last test - when not poorly it should be about 400)
so he cannot have a new tube without another blood
(platelet) transfusion. When the platelets arrived
from Seacroft Hospital at about 21:30, Nurse Mark
gave them to him immediately via the drip and
inserted a new feed tube.
He temperature is high, between 38C and 39C so he's
had more paracetamol to bring it down. The morphine
has also been increased again and a bolus button
added so the nurses can add an extra burst if he
seems in pain. They have given him an extra burst of
morphine three times this afternoon.
Monday 6th September 2004 ( Day 11 )
Alex is no better today. Doctor Tim, Doctor Jo and
the consultant from the Intensive Care Unit came to
see him. They are worried about the temperature that
has not dropped after three days of antibiotics. They
are changing one of the antibiotics to another that
will target a bug that has been grown from his blood
samples. Alex may have to go back into ICU for close
monitoring - he needs more fluids but that would mean
a higher chance of more fluid in his lungs.
Two more x-rays have been taken to show how the
infections are affecting the tum and lungs. When
anyone touches or tries a major operation like
changing a nappy, he screams until (more) red in the
face and his heart rate monitor bleeps warnings that
the rate is over 170 beats per minute.
My Mum and Dad came in early to take over from me but
since he may be going over to PICU, I would like to
stay with him for a while until we know.
Poor old Andrew is down South at work, it sounds like
he would really rather be up here to support Alex and
us. Joan and David came to visit in the afternoon. It
is torture for all of us at the moment because Alex
does not want to be cuddled or even touched.
Kirsten managed to stay at work until early
afternoon. With Alex so poorly she could not bare to
stay away and so collected Tom and raced in.
When Joan and David were due to take Tom home, I had
to take him out to their car. He wanted to stay in
"The House Outside" meaning Eckersley House but later
that evening I was due to go home as well. I did not
want him knowing that I was going home or he would
want to come and I would not get any work done.
Kirsten and I settled down for the evening to watch a
DVD but it was stopped every few minutes for Nurse
Ben to check on him or replace his medication. We had
been moved to a side room, which will be good for
Alex and Kirsten. Much quieter than a bay. Alex was
fitted with a few extra pumps (five now in all)
feeding him with antibiotics, nutrients, fluids and
other medications. Another reason for stopping the
film was Alex threw-up his feeding tube again. The
tube is still needed to aspirate his tum, hopefully
removing all the bile produced in response to the
Nurse Mark, who is leaving for Australia on Thursday,
started his shift and the first thing he had to do
was fit Alex with a new feeding tube.
Eventually, after things had gone quiet and the film
had finished, I crept out of the room, leaving
Kirsten holding Alex's hand.
Tuesday 7th September 2004 ( Day 12 )
Kirsten and Alex had a rotten night again. Alex was
sick quite a few times and twice had to have his feed
During the day Joan and David visited her. It sounded
like Alex was very uncomfortable and they had to
increase his morphine again.
Wednesday 8th September 2004 ( Day 13 )
The night was better. Alex was aspirated every two
hour to remove as much of the contents of his tum as
possible so he would feel less sick.
During the day he mostly slept and cried when he was
I arrived back on the ward at 22:00. Kirsten looked
like she had not slept in a week but Alex was snoring
away. His lips are very dry and have hair trapped in
the skin. I pulled out the longer hairs that must
have been down the back of his throat but the ends
were stuck to his lips. All that could be done was to
cut the hairs short. Vaseline has been used to soothe
his lips. His mouth looks very dry as well but he
will not let me drip water inside, he just turns
Thursday 9th September 2004 ( Day 14 )
During the night Alex's heart rate went up to 185
beats per minute for no apparent reason. Nurse Karen
gave him extra morphine to calm him down and
paracetamol to lower the temperature. Another point
he was obviously in pain, arching his back and
crying. More morphine settled him down. I'm told that
during the day he usually has eleven extra morphine
boosts so a few during the night is not much to worry
He's also received two transfusions full blood, to
bring his red blood count up, and platelets.
Alex surprised us all by sitting up and playing with
his toys. He even laughed a little when Dad and I
played peek-a-boo with him. It quickly tired him out
and fell back to sleep.
Later in the morning the nurse noticed that his left
hand and arm were very cold where the rest of his was
warm. The doctor then the registrar came to see him.
Alex was given a quick infusion of fluids to try to
kick start his circulation.
A consultant from PICU (Paediatric Intensive Care
Unit) came to inform us that Alex can only receive so
many of these fluid infusions/boluses before his
lungs and heart begin to be affected. If he continues
to be cold around the edges with a high core
temperature, he will have to be moved to PICU for
During the evening, Joan, David, Andrew and Kirsten
travelled over to see him. They were all due to take
Tom on holiday early the next morning so had come to
say goodbye. Alex was not looked as good as he did in
the morning and Adam, a consultant, came to tell us
he may have to go into PICU shortly since he is
really poorly. Half-an-hour or so followed of
debating cancellation of the holiday, I don't think
they really wanted to leave Alex but also did not
want to let Tom down - he's really looking forward to
flying. Adam came back in and ended the debate when
he said that he would not go on holiday with a child
Alex was moved over to PICU shortly before 21:00. He
still does not want anyone to touch him and is
obviously in pain so the trip down the corridor and
move to another bed was a bit unsettling.
The PICU team's plans included re-balancing his
fluids, lowering his heart rate (on entry to PICU was
175 bpm) and helping the blood circulation.
Alex was quickly moved from Ward 10 infusion pumps to
PICU pumps and a few more lines were added. Even with
6 tubes going into him, there was not enough access
so SHO Amanda tried to fit a cannula into veins in
his ankle or wrist. Unfortunately he still too chubby
to easily allow a vein to be found. A vascular
catheter was fitted a few minutes before midnight
into his right hip. This is more permanent that a
cannula and stitched in instead of taped, hopefully
making it more comfortable and less likely to be
pulled out. Kirsten and I then went to bed.