38

Well, so that was me home after my big back operation, I must admit I was feeling very stiff and sore.

We had been given exercises to do by the physios, one of whom had caused quite a bit of consternation whilst I was in hospital. It was just as I had been transferred back to the general orthopaedic ward when a young physio man (the OSO was muttering that she had shirts older than him) and he said I had to be got out of bed to do some exercises, the OSO protested saying that I hadn’t been out of bed at all yet let alone doing exercises! The man was adamant that this had to happen; but then came the best bit! He said I needed pain killers to do this and promptly gave me morphine, great, soon I was floating along and laughing, and to be honest, they could have done anything they wanted with me! So I was got out of bed and did these silly exercises. I paid the price later though when the morphine had worn off, boy did I hurt!

It turned out later however that the OSO was right, and I shouldn’t have been got out of bed to do the exercises at all, my back hadn’t healed enough for this to have been done so the young physio lad got it in the neck from his boss so to speak, but I did like the morphine!

Anyway, back at home we did the exercises as we were supposed to and the OSO did her healing on me which helped a lot. It was quite difficult adapting though to being totally rigid from the top of my neck to the bottom of my spine, I couldn’t bend at all. We had told that this was going to happen, but it was impossible to imagine what it would be like. It meant it was a lot harder for the OSO to lift me and get me out of bed and into my chair or bath or wherever else I needed to go if you get my drift! Getting me dressed was also very interesting. As ever, however, we managed and eventually my back got a lot less sore as it healed so we were able to do more. In fact when we trudged back over to Manchester a month or so later the docs were dead impressed with my progress and said they said that I had made remarkable strides (as the OSO said, what a stupid turn of phrase to use for someone who couldn’t walk!) and they didn’t think they had have seen anyone heal as fast as me (we didn’t tell them that the OSO witch had been healing me along the way, they all thought she was barking as it was without adding any more fuel to their thoughts!).

So it was back to home and school as normal, life had to be lived as they say. I think the worst down side of having my back done though was that I couldn’t feed myself any more, which I know will sound very odd, but because I had this great big rod down my back stopping me from bending it meant I couldn’t lean forward at all, and because, by now my arms were very weak I couldn’t get my hand up to my mouth, so I couldn’t eat without help which, as you may imagine was a complete bore; but hey ho, if the rod meant I could still keep on breathing it had to be worth while!

37

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!

 

 

36

Mum and Dad were out the other day with friends and were they were talking about taxis and the time they became taxi drivers, not just like the normal taxi drivers that parents are, but proper; registered taxi drivers!

As you can imagine, in our family it was never going to be straight forward!

I’m going back a bit in time to when I started at secondary school. You may remember it was out of catchment though it was agreed by the LEA that it was the best school for me so that was all fine. The problem was getting me there. I couldn’t get on the school bus, despite the OSO’s best efforts even she couldn’t get me on the bus in my wheelchair. Technically, the LEA should have provided me with a taxi, but because the school was a bit far away they couldn’t get their act together so Mum had to take me and bring me back each day, which was very difficult ‘cause she was working elsewhere and the brothers were still at primary school.

 

Mum and Dad went to yet another appeal and it was decided that the LEA had a legal duty to provide a taxi to get me to school and back. Result. The problem was then finding one that could safely carry a wheelchair. One turned up as just a van with a lift and with no way of securing my wheelchair so I would have just rolled around all the time, and, as casual as the OSO could be at times, even she decided this was not ideal! So another taxi firm was found, but they proved to be completely useless and very rarely turned up on time to take me to school (which, to be honest, I thought was rather a good idea) but then they often didn’t turn up to take me home (not such a good idea).

By this time, as you may remember from a previous blog, Mum had got a job at the school so she said she would take me. The LEA said

‘No’ that couldn’t happen as she wasn’t a registered taxi driver

The OSO said it was ok she wouldn’t charge the LEA she would just take me because there were no safe or reliable taxi firms available.

 

They said ’no’ it had to be a registered taxi driver that took me and then they could then pay them! I know it was ridiculous!!!

By now you have got to know a little bit about what the OSO was like.

You guessed it; she became a registered taxi driver! Well she would, wouldn’t she?!

 

Mum and Dad both decided to become taxi drivers, so they swotted up and took the ‘knowledge test’ and passed, Vera van had to be checked registered and plated. The first thing Dad did was to take Vera and drive her round Sheffield in all the bus and taxi routes which normal drivers weren’t allowed in!

 

So, in the end the OSO got paid to take me and bring me back from school every day, even though by then she worked there and Roger and Alistair also went to school there, how daft was that!!!???