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!