Tuesday 12th October 2004 (Day 14)
Alex, full of morphine, slept until 9. I did the
same. We were hoping that he would be able to go over
to Joan and Davids for lunch and most of the
afternoon but since his temperature has been
unstable, we were advised not to go.
Instead we (including my Mum and Dad) went over to
the Thackeray Museum for lunch. After ordering the
food, I noticed that Alex was looking a big too red
so whipping out the requisite thermometer his
temperature measured 38.5C. Mum took Alex back to the
ward for morphine and paracetamol and Dad and I
stayed to eat.
After a long sleep for most of the afternoon, we took
Alex over to Eckersley House for a change of scenery.
He ate a very good tea considering the milky feed he
has most of the day and night. He painted a nice face
for Tom. It could also have been a house or a tree,
whatever it was very nice. After that masterpiece, he
wanted to paint my face. Just after I had a shower.
My Mum and Dad left about 19:00 and I kept Alex awake
a bit longer than he wanted to because David, Kirsten
and Tom were on their way in. Tom arrived and joined
the weekly Jolly's Trolley delivering sweets to the
ward. Alex gained a bit more energy and played for a
while. They did not stay long but Tom wanted to stay
with his beloved sweet trolley. Two minutes after
they had gone, Alex was in a deep sleep.
Wednesday 13th October 2004 (Day 15)
Alex woke at 6. Quite happy but cried when I took his
loudest toys away so he did not wake the rest of the
ward. We were in the playroom by 5 past.
The doctors, surgeons and consultant are worried
about his line site, it's a little more red than
yesterday. There's not much that can be done about
the lump on his bum until his blood counts come up.
Just about everyone in the hospital has been to see
his line and bum, a steady stream of medical staff.
Alex's temperature has been down to normal all day
but there has been a bug grown by the microbiologist
from the skin around the line site. If it gets
transfered to the blood, his temperature will go up
and more/other antibiotics will be given.
The blood counts of white and red blood, clotting
factors and so on are all as low or lower than when
he was in-and-out of intensive care during the last
cycle. People keep commenting how well he looks and
how remarkable is it to see him with so much energy.
We still cannot take him too far from the hospital
and even trips to the cafe are punctuated with taking
My Mum and Dad stood on duty while Kirsten and went
to the cinema again. While Mum was bathing Alex, he
pulled his NG tube out again. Another was fitted even
though his platelet count is low. We have to watch
out for nose bleeds because of this. He was is a
contented deep sleep when we arrived back.
Thursday 14th October 2004 (Day 16)
We can see that different experiences of the medical
staff make huge differences... the general surgeon
wanted to take the Hickman line out right away but
the consultant said it would be dangerous with the
white/red/platelet cell counts being so low and we
should wait to see what a change in antibiotics will
It becoming difficult for my Mum and Dad too. They
have been over in the UK for months now, burning
through money while someone else manages the building
of their new house in Spain. It would be nice to see
Alex's blood counts come up a little and it would
give them confidence that we are not being abandoned.
I would like them to stay, not just because it's
really nice to have my Ma and Pa here but because
they have given me breaks from Alex when Kirsten is
away and Joan and David are busy with our dogs and
Tom. On the other hand, I can see that they need to
get back to their project in Spain and four months is
a long time too keep them trapped in the UK. It will
be nice to see them over in Spain when the house is
Alex's line is looking even more red and sore, it's
really bothering him now. He scratches at the clear
patch covering the area and screams if pressure is
put on the area, especially when he's picked up. Any
small pull on his drip line and he makes sounds like
the baby t-rex in Jurassic Park. I always said he is
Alex wants to walk everywhere. We had to follow Joan
and David out to the car-park, all the way from the
ward, down the lift and out onto the pavement. When
we arrived back on the ward the consultant was very
surprised to find him so full of energy. All the
blood observations say he is very ill. The consultant
confirmed that Alex has a infection in his blood, the
same bug that is on his skin around the Hickman line.
The red and white blood counts are really low so the
we will wait another day to see if the antibiotics
can save his line.
The Hickman line is necessary to take blood samples
and give medicines while he is very poorly. It should
stay in for around six months so blood can be taken
to check he's still in remission. The surgeon
explained that they do not want to take it out if it
can be helped because it would be difficult to put
another one in, both sides of Alex had now been used
(another line fell out months ago). It would be a few
days until something else more permanent could be
fitted in case the new line was seeded by the current
infection. Until then a temporary cannula could be
fitted. We really want to save the line.
His temperature stayed down most of the day but
ominously crept up to 37.3C during the evening. Still
looking quite well.
Friday 15th October 2004 (Day 17)
Temperature went right up during the night and the
line site looks really red and angry now. The
consultant confirmed that the Hickman line will be
removed this afternoon.
My Mum and Dad drove in to hospital via Joan and
Davids today. They said goodbye to Tom in Ilkley. We
popped over to the Thackeray cafe for hurried lunch
since Ma and Pa need to drive down to the Chunnel by
19:00 and Alex needs to be back on the ward in case
the surgeons are free to take his line out.
I would like to say thank you to Ma and Pa for coming
over and trying to keep me sane. It's a long drive
from Spain and a lot of effort has been spent making
sure we have loads of support. I know Tom, Alex and
the rest of the clan left in the UK will miss your
company nearly as much as I do.
Alex was nil-by-mouth from mid-morning until he went
down to the theatre just before 18:00. He'd had a
platelet transfusion early afternoon and was
currently receiving a full blood transfusion, which
would continue after the operation. The platelets
were definitely required to stem any bleeding that
would occur as the Hickman line was removed. His red
blood cell count was very low so the full blood was
used to boost that. Usually Alex has no energy when
his red blood is low but during the morning he was
quite alert and energetic, if a little moody.
After the operation we were called to collect him and
we could hear crying from a long way down the
corridor. Alex had woken surrounded by strangers and
was showing he disapproval. It was back on the ward,
after a ten minute ride on a transfer bed before he
Part of the distress must have been caused by the
cannula's (temporary tubes going into veins) in both
feed. He will not be walking for a couple of days
until the cannula's are not needed any more. Just
when he's toddling everywhere.
The surgeon said that quite a bit of flesh had to be
removed with the line because of the deep infection.
More antibiotics, and therefore the cannula's, would
been needed for a further two days, at least.
Saturday 16th October 2004 (Day 18)
It's quite difficult to entertain a lively little
monster when he's not supposed to walk or crawl. The
surgeon came to check that everything was going OK
and confirmed that he would be continuing the
I was hoping to take Tom swimming in the morning but
I needed to hear what the surgeon had to say. Joan
brought Tom over by train at lunchtime, which he
I left a very tired Kirsten to look after Alex and
took Joan and Tom home. Tom was really excited to
stay at home. Hopefully it will be permanent soon.
Sunday 17th October 2004 (Day 19)
I spent the morning trying to make our home as tidy
and comfortable as possible for the tired Kirsten to
come home - fitted new lights, changed the bed,
vacuumed, did the washing and washing-up and put out
a mug with a teabag. After all that I raced Tom back
into hospital. Kirsten stayed for a while but raced
off after an hour or so to get some rest, leaving me
with Tom and Alex. Alex wanted to sleep and Tom
wanted to be in the playroom, typical.
David and Andrew came in to see Alex and retrieve
Tom. Putting Tom into the car was easy enough but he
looked forlorn when I kissed him goodbye.
I later rang Kirsten who had taken down the light
that I had put up and was having to tidy the whole
house. Don't I feel like a bad husband. I receive
complements on being a good dad quite often (good for
the ego) but I've never been told I'm a good husband
(bad for the ego). Does anyone know of a good book to
explain how? Answers on a postcard please.
I'm not surprised Kirsten is tired because Alex is
really difficult to amuse when he's not allowed to
walk or crawl. He's been in a pushchair round the
whole hospital site - twice, up and down the corridor
what feels like 200 times and spent hours and hours
in the playroom. Mostly he plays with the toys around
him but quite often it something across the room that
makes him want to walk.
One of the cannula's came out this morning because it
was not working. The other needs to stay in a day or
so more so the antibiotics can be finished. Saying
that, his dressing was changed this afternoon and the
area that is/was infected looks really bad. There's a
hole about one cm in diameter filled with dry blood
and the skin around is really red and sore looking.
Morphine is still being administered to help with the
sore area but it should have cleared up by now. The
Charge Nurse thinks he will have to have a couple
more days of antibiotics meaning that we have to be
even more careful with the cannula in his right foot.
It's 21:34 and Alex is still fighting sleep. Drugs
are needed - some for me, some for Alex.
Monday 18th October 2004 (Day 20)
The pillows deflate. Really, they do. The NHS pillows
are plastic and waterproof. When you put weight on a
pillow, there's a hole somewhere that slowly lets the
air out. Some NHS magic allows the pillows to
self-inflate once the weight is off. So finding a
comfortable position requires planning ahead... one
pillow is too thin when deflated and two are too
thick when inflated. Put two pillows together and
place head on top. The head is now at an awkward
angle but after 15 seconds or so the pillows have
deflated and comfort is achieved.
Now Alex, being a clever sod (gets it from my Gramps)
has figured out that once settled (after nappy change
or other night time disturbance) will wait till the
deflation of the pillows has finished before crying
again. This is no joke and I'm not exaggerating,
much. He will wait till I am comfy then throw a
dummy, bottle or fit.
Last night Alex needed a change at 3. Once changed he
appeared asleep again so back to bed I went. After
four deflation's, I gave up and took him out of the
bay to allow the other kids some rest. An hour later
he was back in bed again. He was nice to me in the
morning and did not wake again until 8.
The last cannula in his ankle was leaking both blood
and antibiotics so it had to come out. Unfortunately
Alex was very sleepy at the time and did not want to
enjoy the freedom. Just as he woke again, at about
11, the doctor came to fit the new cannula. It took
one nurse, one dad, two doctors and six tries to find
a vein. His arms now look very bruised and he was
nearly sick from screaming. It's at points like that
really look forward to this being all