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!