My history of operations due to my hydrocephalus began when I was only two weeks old which was when I was diagnosed with hydrocephalus . I was much too young to be able to remember the operations I had when I was very young. Now the years have passed, I have had to rely on my medical history over the years to gain some insight into operations I had and what my recovery was like. As I've said before in an earlier post, when I was born I experienced a lot of complications from my extremely premature birth, and my vulnerability then was also seen when the surgeons tried to carry out operations on me as some had to be abandoned as I was too ill to cope with going through an operation at that time. The first shunt operation was to insert a VP shunt on the right side of my brain. I had a shunt on this side of my brain for years and it was replaced there everytime it failed until the surgeons decided to one day insert the shunt on the left side of my brain and leave the pressure valve from that one and disconnect the catheter from that side, so I have a working shunt system on the left side of my brain and one that doesn't work (known as the" redundant"shunt ) on the right side.
I don't have too many memories of being in hospital with hydrocephalus as I had all the problems with my shunt when I was a child. I'll talk about the things I do remember.
I remember that a lot of my treatment and operations for my hydrocephalus and my shunt was done at the Radcliffe infirmary hospital in Oxford, and that each time I was ill I would be on the children's ward there. Anybody gets bored when they're in hospital and I missed my family and friends a lot. From the moment I was back on the ward after the operation, I can remember I was hooked up to a drip for fluids as I couldn't eat or drink anything as very often after the operation I would get the symptoms of sickness and headache that I had beforehand. Once or twice I had to be operated on again quickly after the operation as something was wrong with the positioning of the shunt, or how my body accepted it. I can also remember that I looked forward to family and friends coming to visit me in hospital and once I even got a visit from my classmates and teacher from primary school – they had all made me get – well cards. I remember that I made a friend in hospital, his name was Chiro , he and his family were Italian and lived in Oxford. He was about the same age as me at that time and he was in hospital because he had cancer. My mum and his mum were quite friendly, as having children in hospital created a bond between them. One memory I have is of playing board games – especially – Connect 4 – on the days that we both felt slightly better. We got on well.Chiro lost his fight with cancer and I can remember my mum and I feeling very sad but my mum kept in touch with Chiro's mum long after I had come out of hospital, and as I was growing up. At some point in my life my hospital stays were split between the John Radcliffe and Radcliffe infirmary hospitals, in Oxford. I have got another memory that has always stuck in my mind was when I was in hospital in the John Radcliffe and I felt really fed up one day and wanted to go home was really grumpy and yelled at a nurse. Something I'll always remember is the feeling of being able to eat food again after having been drip fed for a long time. I can remember they asked me what I wanted to eat, and lots of things came to mind such as chocolate and anything sweet (I have a really sweet tooth!) When I was young, I also loved Marmite sandwiches, so that was the first thing I asked for: a toasted marmite sandwich. Another thing I'll never forget was the excitement when they discharged me from hospital, and being back home again. Some of the worst memories for me were having the symptoms I had , being scared about the operations , taking my medicine and having my stitches out.
I have always been very inquisitive, and was even as a young child. When I was in hospital I would always ask the nurse before the operation what they were going to do to me and whether it was going to hurt me. She obviously explained it to me in a simplified way, as you would to a child, but I think her explanation reassured me made me feel braver . I also remember that a measure of bravery in the hospitals when I was there (at least those hospitals) was that if a child was really brave they would receive a badge with a hedgehog called Herbie on it that said" I'm as brave as Herbie " . I still have the badge today.
I hated taking my medicine because one was bright orange and the other was bright yellow banana flavour.
Since that day I have never really liked banana flavoured medicine (!) .Sometime after I was discharged from hospital, mum took me to the local health centre to have my stitches taken out of the part of my skull at the front of my head where I had an operation to insert an intracranial pressure monitor ( ICP). I can remember that it was a bit painful and that the nest wasn't very nice. That was when I was 11 and the last shunt – related operation I had to think what got me through my hospital stay that time was the visit from my grandparents, parents and sister.I can remember that recovery that operation was difficult and especially frustrating as for 24 hours I had to have my head takes to the pillow and was unable to move it so that the doctors and nurses could monitor the signal from my brain. I can also remember feeling incredibly dizzy and feeling) was moving. Throughout my hospital stays, I always had the support of friends and family, and my mum often stayed overnight in the hospital with me so that I wouldn't feel alone. My sister Nicky and I have always been close, and she would get really upset whenever I was in hospital. My parents were also worried for me every time I was operated on as they didn't know how or if I would come through the operation. As you see from this blog post, I went through a lot due to my operations, but looking back I think I can definitely say that I was "as brave as Herbie" !
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