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10 October 2010 –
Surgery Date – Cranial Reconstruction -
Cameron 3rd Cranial Surgery.
Leading up to surgery, Cam
started having raised Inter Cranial, he was suffering
terribly from headaches and was daydreaming, and he
simply was not his normal happy self. We arrived at the
hospital extremely anxious, cause Cammie was now much
bigger than before (2.5 years old) and will know and
understand the pain and trauma he is about to go
through, from a parents point of view, so very hard,
cause you cannot protect your child or take on the pain
they are about to experience.
The night prep, Cam was in
such high spirits. The labs arrived to take his blood
samples so that the donors blood could be matched and
ensure suitability. Cam had a very good sleep; almost
that he was none the wiser of what the day ahead held.
All he kept asking for, in pure innocence was a ride on
the golf cart in the parking area; of course we had to
comply. All prepped and ready for surgery we began the
journey.
Day 1
Due to the complexity of the
surgery, Cam had to be put out in Radiology so a Cranial
Stealth Navigation could be performed in preparation for
surgery. 08h30 he was anaethetised.
We being the anxious parents
waited in the cafeteria, eventually a SMS came through
from the Anesthetist, it was now 11h30 and Cam had
finished being prepped for surgery. Our hearts were
sore. The trauma and pain our child was about to go
through was unbearable. It was a very long day for
the family; we received a message at 15h45 to say all
had gone well and that Cam had just been transferred to
ICU for recovery.
When meeting with the team,
they were all happy with the outcome of the surgery, a
full reconstruction of the back of his head had been
performed, opening up from the base of his neck in a
hockey stick shape to his right ear. They opened the
skull to allow for space, and added a hinge onto the
mastoid, creating a cavity hopefully allowing additional
growth for the future. Only down side, was a piece of
the derma at the base of the head was torn and had to be
repaired. They cut through all of the muscles in the
base of his neck, so that would take a while to heal.
When seeing Cam lying there in
ICU, we were crushed, he was in pain, yet was well. He
was a very brave boy, he was talking a little bit, yet
was very teary cause he was very sore, when you asked
him “are you a brave boy he would just answer,
yes!” He was sedated due to the pain.
Day 2
ICU, Cam was feeling much
better, just still in a lot of pain, but was passing a
few chirpy jokes here and there.
Day 3
ICU, He was full of spirits
sitting up with his drain and giving the nurses and
family visitors a really hard time.
Day 4
Cam was transferred to High
Care; he was doing so well, just extremely frustrated as
he is so mobile, yet could not move around the cot
much. Mom was very worried about him, tried to take him
to the bathroom, and he seemed to have lost his sense of
balance. Raised this with the Surgeon and Neuro and
they did not seem to concerned, yet mentioned we would
need to watch this, as long as the wound was draining
they seemed happy.
Day 5
Cam seemed to be doing very
well, was in high spirits as he seemed to now master
walking with his drip and drain, and he got to see his
sister as well. We were all high spirits as we were
told his drain would be coming out. They took his drain
out in the morning and he seemed to be doing well, the
base of his neck seemed to be swelling but was not sure
if this was to be a point of concern or not. Cam had
his usual afternoon nap, and when waking up, all hell
broke loose; he had a CSF (Cerebral Spinal Fluid) leak.
His entire pillow was wet with fluid and a little blood;
it was seeping through the entire wound from the base to
the top of his head. I called the docs and in the
morning the Neuro arrived and was extremely concerned,
CSF is not good, leading to infection, possible
Meningitis etc.
I also happened to mention
that Cameron had started drooling excessively. From
what was then explained is basically there was
complications caused from the Derma being torn in the
surgery, therefore causing the CSF leak. The
complications from this, can lead to water on the brain
and very severe infections and complications. The neuro
took cammie straight down to Radiology for a CT scan, as
he possibly wanted to do a Lumber puncture and spinal
drain and the top of the neck to drain the fluid. He
could not do that as Cammies brain has started growing
down next to his spine.
Day 6
The decision was made to take
cam back into Surgery. We were extremely anxious and
did not know what to expect, we were very upset the
doctors explained that all was not good, they needed to
reopen and basically perform the procedure again, and
repatch and stitch the leak again. There was also a
possibility that they would need to remove his 1st
vertebrae as this may be a better solution long term,
which clearly we were not happy with, as this would lead
to cammie having no normal functioning and movement of
his neck.
Cam went back into theatre at
14h30. He was such a Superhero and was so brave. He
was even joking and put his plastic stethoscope around
his neck and urged the doctors to take him back into
surgery as he was ready. They performed the same
procedure again, all went well and he was transferred
back into ICU at 17.30, he was in a lot of pain and was
very upset. The Pediatrician was concerned as the
Antibiotic they needed to give him to try prevent
infection, was so strong, he had a very bad allergic
reaction, his whole body went red from fever, shame he
really was in a lot of pain and was very upset. They
thankfully sedated him to get him through the night.
Day 7 & 8
Cam was in ICU for an
additional 2 days, with a lot of frustration being taken
out on us, as being a very active toddler, to being
hooked up to all the machines , monitors etc and he was
bedridden, all he wanted to do was stand.
Day 9
He was transferred to high
care on the Tuesday morning; he seemed to be full of
beans, making jokes with all the nursing staff along the
way. He stayed in High care and had very little
appetite. My precious boy, who is always so gentle,
seemed to be having the worst temper tantrums ever. He
was seemingly more aggressive as he was so frustrated
with being in the hospital for such a long time.
Day 12
We were hoping to go home on
the Friday and Cam caught a bug causing him to vomit.
This carried on for the Friday and Saturday, eventually
he was so upset and just wanted to come home, his drain
had drained a lot of the spinal fluid out so doctors
were happy to remove the drain. The poor angel had to
go through the pain of having the drain and central line
removed again. We asked to be discharged even though
Cam was not keeping is food down, as I truly feel he was
very frustrated and needed to get back home to his own
environment.
Day 13
We came home on Saturday and
all went well, Cam was like chalk and cheese full of
spirits being back home. He has a huge cut on his head
and seems very aware that it is there this time. He
does have pain in his head from time to time but hoping
that this will go away. His aggression has got better;
we feel it was just pent up frustration from the trauma
he went through.
1 Month Post Surgery
He is now doing well, running
around like a normal 2.5 year old, causing caos. He
wound is healing nicely; he does however have a lot of
scars to prove he is a “True Superhero”
The journey ahead will still
be a long and treacherous one; Cam needs to go for eye
surgery soon to correct the muscles in his eye caused by
complications from his cranio to assist his eye not
being pulled back into its socket.
Please keep him in your
prayers, especially hoping that his brain moves into the
cavity they have now created, as if it continues to grow
down next to his spine, it will not be good and they
will have to remove his 1st vertebrae to
relieve the pressure of it sitting on his spine. We do
not want this to happen.
But for now Cam is a healthy
happy Superhero living with Cranio……. His journey still
continues.
Thank you to all of you for
your enormous support for our family, thank you for all
of the prayers and messages throughout this current
ordeal.
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