As
you know I used to have to go over to Manchester to the hospital for checks on
how my MD was progressing, I didn’t much like going to be honest because all
they told me was that I was deteriorating which I knew anyway!
One
time we went, we got to see the top professor and he decided that it was time I
had a steel rod put down the middle of my back! It sounds drastic and believe
me, it was!
DMD
often means that your back gets all bent (called scoliosis) because the muscles
simply can’t hold it upright as they are too weak, this in itself is not a huge
problem, but as the prof explained to the OSO and Dad, it could mean that I
would have difficulty breathing because my lungs wouldn’t be able to work
properly because I would be all scrunched up (another medical term!)even they
could see that this could be a problem, but we couldn’t decide what to do
straight away despite being somewhat pushed by the prof., so we went home to
have more discussions and more time to decide.
Overall,
I think the OSO was the least keen of us for me to have the operation; it would
be a huge operation, I would have to be in intensive care afterwards and you
may remember from my tonsil operation DMD lads are not good with anaesthetics.
Also after the op my limited mobility would be even more limited due to me
having a huge great steel rod holding me bolt upright down the middle of my
back, but in the end we decided if it helped to keep breathing for longer we
would go with it.
Mum
and Dad always involved in discussions about me (very considerate!) and it was
often really difficult to make decisions like these, because at best, we were
guessing.
So
I was scheduled to have this big operation at the Manchester hospital where the
experts were. This was going to mean a lengthy stay in hospital for me and the
OSO who would be coming with me (I couldn’t persuade her not to). This again
proved to be somewhat of a logistical nightmare organising time off work for
the OSO, sorting out care for Al and Roger, and most importantly, who was going
to walk the dogs and feed the cat!
In
the end it all got sorted and Mum and I were deposited at the hospital ready
for my operation. I had to have loads of tests to make sure I was fit enough
for the op (things like making sure my heart was beating ok, quite important I
thought). Eventually we got to the morning of the operation, both the OSO and I
were pretty nervous, but as usual, we joked our way through all the pre op
stuff and eventually I was sent off to sleep (kind of them I thought) for the
very long op. During the operation the OSO took herself off for a very long
walk. I know, most parents sit in a room by the operating theatre, but I’m sure
you know the OSO well enough by now to know that she would never do the same as
normal parents!
Apparently
the op didn’t go too badly, I kept losing a lot of blood (again another bad
side affect of DMD) so I had lots of blood transfusions and my potassium levels
were in my boots, but apart from that I ended up alive in intensive care. They
kept me asleep and sedated and on a breathing machine for over 24 hours. That,
they told us was what they always did and it gave the best chance for recovery
and who were we to argue, something the OSO never did!
Eventually
they took me off the sedation and I slowly woke up only to become increasingly
aware that the OSO was faffing about, muttering about feeding me bananas because
of my low potassium levels (I ask you). Eventually Mum and the nurses realised
that I was awake, but couldn’t speak because I had the breathing tube still
down my throat. So they found a spelling board for me. I had to point at the
letters to spell out what I wanted to say, very laborious, but at least it
meant I could quickly as possible spell out
‘shut
up Mum’
It
wasn’t too bad in intensive care, the nurses were great and Mum felt very
supported too. Eventually I was transferred to high dependency and then onto
the orthopaedic ward where there were lots of other kids who had had bone type
operations. By this time we were both getting bored and wanted to go home, my
back hurt like mad, though I was given lots of pain killers, the OSO had
started to climb up the walls as might imagine. Dad and Roger and Al came to
visit a couple of times, but it was a long way for them to come; though one
time they bought Rfor with them to visit me. Rfor was my pet rat (R for rat)
and he was fantastic, I really rated him, he used to ride round with me on my
wheelchair sitting on my shoulder. He always knew the time I would be coming
home from school and would sit on top of his cage at about 4.45 the time I got
home most nights. Anyway Pop and my brothers fetched him to visit me, it was
fantastic, all the other kids on the ward thought he was brilliant, he went to
see all of them, the nurses weren’t so keen and hid in the nurses station! It
made my day though!
Eventually
we were allowed home and then got on with ‘normal’ living, though what was
normal for the wood household I was never sure!
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