Well here we are again - back in hospital.
This story begins with Nick's routine eye examination
with our ophthalmologist. We missed the actual appointment due to not receiving
the appointment letter so were re-scheduled to a couple of months later, on the
26th of May. Upon examination of Nick's eyes Dr Forrest said that his
optic nerves were swollen again and that he would contact
the neurosurgeon. He told us to go home, don't worry and that someone would be
in contact with us. Well as the story of our life goes, no one from the hospital
rang us. So as we have learnt over the years we made our own appointment to see
the neurosurgeon the next week as it had not been done on our behalf.
My husband Joe took Nick in to see the neurosurgeon. He
had not been told about Nick and there was nothing written in his file to tell
him what was found. So Joe explained what the ophthalmologist had told him. The
neurosurgeon asked whether a CT scan had been arranged, which of course it
hadn't. The neurosurgeon then said that he would organise it and we would see
him after it was done.
Well for two weeks we waited for the appointment but did
not receive one, so I rang the hospital and found out that Nick did have an
appointment but it was in 4 weeks time, on the 29th of June. We were a little
concerned about how far away the scan was but we knew our hospital system and
how hard it is to get a CT scan appointment. We also had faith in our doctors
that they had Nick's best interests at heart.
I must make the comment here that during the weeks that
we waited for the CT scan we noticed Nick's behaviour in particular change. He
changed from his placid self to a boy who threw a lot of temper tantrums and who
got upset easily and who had mood swings. His speech also deteriorated. We went
from understanding about 90% to understanding 10% of what he was saying. Nick's
veins on his forehead also became much more visible and his little soft spot
bulged and pulsated. These changes towards the end made us quite concerned.
We were also concerned because we know swollen optic
nerves can cause blindness but we didn't know how long it takes for this to
happen. The neurosurgeon put our worries at ease and said that it takes a long
time for this to happen.
CT Scan on Thursday, 29th of June
Nick was admitted to hospital on Thursday the 29th of
June, for the CT scan. While waiting I checked that the ophthalmologist was going
to be there because another thing we have learnt over the years is that you
cannot presume that things have been organised as you are told that they have
been. The ophthalmologist registrar was in the CT scan room which was pleasing to
see when Nick arrived and she looked at his eyes when he was under sedation
before he had the scan. Nick was given gas to sedate him which worked really
well and he woke up quite quickly afterwards.
The ophthalmologist registrar told us that Nick's optic
nerves were still swollen. We then had to wait for the neurosurgeon to be in
contact to let us know the outcome of the scan.
The Hardest Part of Hospital is the Waiting
I always find the hardest part of being in hospital is
the waiting for the doctors to come and see you. This is because you never want
to go too far incase you miss them but often they say they are coming but they
don't arrive.
We waited for a couple of hours and then asked the nurse
if she could find out when the neurosurgeon would be coming to see us as we knew
that he had a clinic at the hospital at midday. We were told that the results
were not in yet for the CT scan but that we would be notified when they were
ready. As it was approaching midday when we knew the neurosurgeon would be
there, we again asked the nurse what was happening. She rang the neuro's nurse
and we were told that the results would not be in for hours but that the
registrar had gone to look at the scans. We knew that the neurosurgeon leaves
after his clinic and we didn't want to be forgotten about so we went and sat
outside his door. The registrar saw us there and told us that he had gone to
look at the scans and would see us in a minute to tell us what was going to
happen. He then came out and said that he had to go but would be back in a
little while to tell us the results! More waiting..... my husband Joe went and
got us some lunch and brought it back and we sat and waited for the registrar to
return. Which he did eventually.
The registrar told us that the CT scan looked fine so the
next step was to insert a ICP probe into Nick's brain and put him in ICU for 2-3
days to measure the amount of pressure that was in his head. If there was no
pressure in his head then the swollen optic nerves were something to do with his
eyes. If he had ICP then surgery would most likely be the outcome.
Operation no. 4 - To Insert a ICP Probe on Friday, June
30th
The registrar told us to come into the hospital at 8:00
am the next morning and that he would operate on Nick at lunchtime. We arrived
on time but Nick was not operated on until 5:30 pm. We ended up being admitted
to the ward while we waited.
Nick went into surgery at 5:30 pm and we waited, not
knowing how long the operation was going to take (we had forgotten to ask).
After a couple of hours we went to ICU and asked whether Nick was there - he was
just about to arrive. The ICU nurses called us when he was ready to be seen.
Nick was not too happy in ICU and had painkillers during the night and for the next morning. He had the usual ICU monitors attached to him plus the ICP probe which was attached to a monitor as well. Nick spent 2 nights in ICU, with me sleeping (more like dozing) in a recliner rocker beside his bed. Nick was supposed to have spent another day in ICU but he moved too far on the bed and the probe became detached from the monitor. When the nurse tried to make the monitor work again after she reattached the connections, it would not. The ICU rang the techs for the monitor but it still would not work. So on consultation with the neurosurgeon's registrar the probe was taken out and we were sent the ward.
What the ICP probe showed was that Nick was getting quite high pressure in his head (readings up into the 50s - we were told that normal was below 20) when he was sleeping. He also showed high pressure when he was upset (which we were told was quite expected) and a couple of times that I saw, was when he stood up.
Nick was not too happy in ICU and had painkillers during the night and for the next morning. He had the usual ICU monitors attached to him plus the ICP probe which was attached to a monitor as well. Nick spent 2 nights in ICU, with me sleeping (more like dozing) in a recliner rocker beside his bed. Nick was supposed to have spent another day in ICU but he moved too far on the bed and the probe became detached from the monitor. When the nurse tried to make the monitor work again after she reattached the connections, it would not. The ICU rang the techs for the monitor but it still would not work. So on consultation with the neurosurgeon's registrar the probe was taken out and we were sent the ward.
What the ICP probe showed was that Nick was getting quite high pressure in his head (readings up into the 50s - we were told that normal was below 20) when he was sleeping. He also showed high pressure when he was upset (which we were told was quite expected) and a couple of times that I saw, was when he stood up.
We then played our waiting game again to find out what
was going to happen next.
Operation no. 5 - Shunt Revision on Thursday, July 6th
We went back to the ward and waited. The next day one of
the neuro's registrars came to see us and told us that Nick would be having
another CT scan so we fasted him. A couple of hours later the other neuro
registrar came and said that it would not be able to be done that day so Nick
could eat and that no other CT scan would be done....
The next day which was 2 days after leaving ICU the
neurosurgeon came. As it was the holidays he was extremely busy which I can
completely understand, but to be honest it was a very long two days, waiting,
wondering,... fasting, not fasting...... then wondering when the neuro was going
to show up. Nick too wasn't the best of patients exhibiting a lot of temper
tantrums and yelling at me which was hard to deal with in front of other people.
But finally on the Tuesday the neurosurgeon came. He told
us that yes Nick had high pressure so there was a problem. He decided that even
though Nick's CT scan had shown that the shunt was working, he thought that it
would be a good idea to go in and take a look (particularly based on previous
experience...) He then had to find a time to operate on Nick as he was really
busy. We then had to wait once again for a time....
The next day, being Wednesday, the neuro's registrar came
to see us and told us that Nick would be operated on Thursday morning. I was
really happy to finally have something done.
We were then moved from the medical ward where we had
been staying to the surgical ward.
Nick fasted from 6:30 am Thursday morning and went to
Theatre about 1:30 pm. It is interesting to note that the hospital was having
its 75th birthday and I was invited as a special guest as I had been through the
hospital as a child with my Crouzons and now the kids are. But because of
preparations for Nick's op and he not being able to eat, I was unable to stay
very long which was a shame.
Nick was in theatre for two and a half hours. The neuro's
registrar who performed the surgery found that the shunt, once again, was indeed
blocked. The third ventricle apparently was too full of fluid. So a brand new
shunt was put in (the time before just the catheter was replaced). Nick went
back to the ward afterwards to recover.
We were told by the neurosurgeon that we would be able to
go home on the following Monday. Saturday rolled around and Nick was so good
that the neurosurgeon said we could go home which was wonderful.
A week later we took Nick to our family doctor to have
the stitches taken out of his head.
© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission.
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