Growing Up in Hospital

Developing a medical condition at a young age meant in lots of ways I had to grow up fast. Suddenly I had to try and understand all of this medical language, take medications, go into hospital and have lots of treatments which I didn’t really understand. It was almost as if I was expected to act as an adult, but in a kids body.

What I find interesting about when I reflect on my time spent in hospital, is that its all the happy times that come to my mind first. Some of the particularly bad times I had actually forgotten about, and its not until I get reminded of them by mum or dad that I remember that they defiantly happened!

Ward 3A of Yorkhill Childrens Hospital quickly became my second home. I still have a very vivid picture of the first time I ‘stepped foot’ on the ward. I was greeted by a nurse called Dee, she watched me come along the corridor, told me that I must be Hope, I nodded slightly confused at how she knew who I was without me telling her, she looked me up and down and then informed me that they would need to get me a longer bed – apparently I was quite a bit taller than the kids they were used too!

I could easily write a book about my stays in hospital, but I thought I would share a couple of stories. A pretty funny one, and a not so funny one. I’ll start with the funny one.

Anyone who has spent any time in hospital will know what most wards come with student nurses. Personally I always loved student nurses because they generally had more time to sit and chat and play silly games than the ward nurses did. If I had £1 for the amount of games of uno I played in hospital I would never have to worry about money again! Anyway, during one of my stays when I was in for just over 6 weeks, there were two student nurses who had their last ever placement before graduating. I was there for their whole 6 week placement, I showed them around the ward on their first day, and become quite good friends with them. On the last few days of their placement it was decided that someone should play some sort of trick on them, it was also decided that that someone should be me.

For a couple of days at every meal time I sneaked an extra pot of jelly, or custard, or rice pudding, or yogurt – whatever was on offer really! –and hid them amongst my clothes in my locker. I told a couple of the nurses and Shona – the wards play specialist – what I was planning, they just shook their head and gave me one strict rule – to keep any mess in the bathroom! The main bathroom of the ward was right beside the nurses station with computers, documents and loads of patients hospital notes everywhere, so I could understand them wanting me to keep it in the bathroom!

I took a basin from the bathroom, got all my ingredients; jelly, custard, rice pudding, yogurt, shampoo, orange juice, milk and some porridge oats for good measure! I mixed them all together and filled 10 50ml syringes (I managed to talk one of the nurses into ‘lending’ me them – what a silly woman!) with the gunk I created.

At this point of my hospital stay I was attached to an epidural and a couple of drips, which meant I generally had to get someone to push my drip stand next to me while I pushed myself in my chair. Between a couple of nurses and Shona, we decided that I would go into the toilet, push the buzzer for someone to ‘come and help me back to my bed’ and the nurse would send the students in. I gave Shona a few of the syringes and she hid behind the bath, I pushed the buzzer, the students came to ‘help’, opened the toilet door and I squirted the gunk all over them, they tried to run away but Shona squirted them from behind! They did run away after that, I still had a few syringes left so Shona grabbed my drip stand and we dashed after them. We totally got caught up in the moment and completely forgot the rule of ‘keeping it in the bathroom’ and ended up squirting the gunk at the nurses station – whoops! The whole thing was hilarious, the students were covered in an oddly smelling sticky mess, my stomach was sore from laughing and lots of entertainment was provided to my fellow patients and their families! Despite getting my concoction all over a filling cabinet, the nurses found the whole thing pretty funny too, and it seamed an appropriate way to round of the students time as student nurses.

Hospital wasn’t all fun and games, in fact most of the time it was the complete opposite. During one stay my team were a bit lost as to what to try next, so decided to to get a new doctor to look at me. She was an orthopaedic specialist and from the very beginning she didn’t seam to even acknowledge the fact I had a chronic pain condition and only seamed interested in my ankle which was fused planter flexion – pointing down. She specialised in club feet, and wanted to treat me as if I had a club foot. Clearly I didn’t, I got very frustrated because it felt to me that she was trying to treat a side affect and not the cause. Yes, my ankle was in a very bad way, but the reason for that was the chronic pain! Looking back I realised that I really didn’t have much say to what was done to my body.

I was taken to theatre, and a couple of hours later woke up with a purple sparkly cast on my ankle - because that really made the situation better . . ?!! The aim was to try and get my ankle into a better position. The night after they put that cast on my foot was one of the worst nights ever. I always used to suffer from bad spasms in my leg, especially in my foot and ankle. When I had a cast on that made them even worse because the spasms didn’t have anywhere to go. Every time my foot spasamed I just screamed and cried uncontrollably. That night I had to get moved into a single room on the other side of the ward because apparently my pain was keeping other patients awake and upsetting some kids. Looking back I cant believe I actually tried this, but I even tried to work out how to increase the dosage of my epidural, there was already some pretty hefty medication going directly into my spine, but I was in so much pain and I just wanted a tiny bit of relief! One of the nurses seen me and paged an on-call anaesthetist who came up and increased the dosage slightly, but I was still in complete agony.

That cast stayed on for about a week I think, the whole time I knew it wasn’t right, it was far too tight and digging into my skin. Normally I couldn’t even touch my own skin due to the pain, never mind cope with a cast on it! When they took it off, they were surprised to see that my skin was completely rubbed raw at the top of my foot. I wasn’t surprised at all because I had felt it happening all week! A few days later I was back in theatre for cast number two. It was agreed that the first attempt was a bit of a disaster, so this time they were going for a slightly different set up. They would cast it, then split the cast and make a form of splint. This way I could take it off and on. I still wasn’t too keen on this idea, but it seamed a little better than the first. However, it caused even more problems. My physio would want me to take the cast off to complete all my exercises, then the doctor would want me to put it straight back on, but in the time of doing physio my foot would swell to the point that it didn’t even fit in the cast, but I still had to try and force it on.

The period of all the casting fiasco was practically bad. I couldn’t even lie down in my bed because it caused so much pain, any sleep I got was had sitting in a weird position in a chair, I barely ate or drank a thing because I was in so much pain, and to make everything 10x worse I picked up an infection (in my thumb of all places!) so my epidural had to come out which left me just on oral medication that barely touched the pain. I was very glad to go home after that stay!

Yorkhill children’s hospital was a massive part of my life growing up. I made lots of friends in there, but I also lost a couple of friends. There were points that I realised the harsh reality that there were some seriously ill kids in there and not everyone was going to get better. Yorkhill was such a big part of my life that I actually ended up going back as a hospital volunteer playmaker. Whenever my friends asked me what I did, I simply said that I cheered sick kids up – or tried to! I could relate to the children well because I knew what it was like to be in the hospital bed. A non-medical person going in to play a game for 15 minutes can really make a big difference to a hospital stay.