So, despite everything
being relatively smooth and me going to have regular healing and my big op,
things didn’t really go too well after that.
I had been admitted to our
local hospital on couple of times because I kept getting chest infections. One
of the troubles with DMD was that it affected all of my muscles including the
ones that made me breathe and let me cough properly. (intercostal and
diaphragm) if you want to be correct, so I quite often got chest infections
because I couldn’t cough properly to clear my chest of any mucus. I know this
might seem hard to believe, but that is how it was, and as far as I was
concerned it was one of the worst effects of dystrophy, not being able to cough
or breathe very well is not one of the best things in life.
As I got older this
breathing and infection thing got to be more of a problem. One night I was
struggling a bit to put it mildly, it had to be bad ‘cause Dad and the OSO
decided to call an ambulance! (I told you it was bad, that never would have
happened otherwise!) Anyway the ambulance turned up and the ambulance people
were really nice and they decided that they had better take me into hospital
for them to check me out and try and get my chest clearer so I could breathe
more easily (good plan I thought). It was decided that Mum would come with me
and Dad would stay at home with Roger and Alistair who were in bed as it was
night time. Of course they had been asleep but woke up when the ambulance
arrived thinking there was something exciting going on. When they found out it
was just their big brother who couldn’t breathe they thought it was dead boring
and went back to sleep again! How caring can you get?
Anyway the OSO and I got
dropped off at the hospital only to have to wait ages and ages and ages (if you
have ever been in a situation where you have to wait for something to happen
whilst you are with the OSO you will realise that having difficulty in
breathing is a piece of cake! She is dreadful, she is so impatient it’s
ridiculous!)
Eventually I got seen by
some doctor who really seemed to have no idea what Muscular Dystrophy was, let
only the problems it brought, it was plain daft! The OSO and I had to explain
it to him, which was difficult for me because I had difficulty drawing breath,
let alone speaking. In the end they did nothing would you believe it? They said
I needed to go and see my GP next day and I was to go home. The OSO was NOT
happy, but there was nothing that even she could do then.
By this time it was around
2 in the morning, Mum asked them how were we going to get home? Of you you will
have realised that Dad was at home with the bothers and there was no way we
could call a taxi at that time in the morning that would be able to fit me and
my big chair into their taxi. ( you will perhaps remember from my previous
blogs that wheelchair taxis were not a common phenomenon (spelt that correctly
first go)) The nurse looked at her askance and and said we would just have to
sort it out and left us to it.
In the end Mum had to ring
Dad who had to come and fetch us in the van. Of course he had to wake Roger and
Ally up and bring them too because he couldn’t leave them alone at home.
The upshot was that next
day I did go to our GP who was great, I got some antibiotics for my chest and
she stirred things up at the hospital saying it was ridiculous that this
situation had occurred. It was then arranged that a week or so later the OSO
and I visited the hospital and the children’s ward so if I needed to go in
again because I couldn’t breathe they would have some idea of what to do with
me!
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