A Very Long Snake

If you've been following this blog for a while, you'll remember how William had a fair few ups and downs while he recovered from his transplant and how I likened it all to a game of snakes and ladders. We had a nemesis snake every time we tried to turn his feed above 15 mls per hour and became more well known than I would have liked in X-Ray and Theatre to identify and fix blockages. When you go for transplant assessment, it is made very clear to you that transplant, although a wonderful, life saving thing, is not a golden panacea and that having a transplant is swapping a set of chronic medical problems for another, all be it a less dangerous and immediately life threatening, set. Sometimes, it is all too easy to forget that that game of snakes and ladders goes on throughout life after transplant. We've just had a bit of a reality check and have hit a very long snake indeed, one of those you land on when you think you're home and dry in the game and that takes you all the way back to the first line of numbers.

William had his stoma revised in April because it had prolapsed. He'd never been right since then and seemed to be losing a lot through his stoma, especially after his special milk shakes (scandishakes). His weight had stuck a bit and I was concerned but not too worried because he seemed well in himself. I did have the feeling we may be facing a hospital admission before too long for a review and, perhaps, a change of feed. What I wasn't expecting was for Wills to wake one morning looking more dreadful than I've seen him since his transplant, white with dark rings under his eyes and floppy. I called his Dad who, luckily, wasn't at work and we took him to Chelsea and Westminster. He was very dehydrated and his stoma was pouring. Tests showed he had a lot of sugar in his stoma fluid, indicating he wasn't absorbing much at all and his blood sugar levels were low, even after a milk shake. I was worried he was rejecting his bowel and I wasn't the only one.

The next day, tests came back showing he had rotavirus. We all breathed a sigh of relief and he was started on immunoglobulins (factors in the blood that help fight infections) into his bowel to help him combat the bug. Things didn't settle and, as rotavirus can cause rejection, we were rushed by the most stomach churning blue light ambulance ride to Birmingham Children's Hospital for a scope and biopsies with the concern that he was rejecting. Thankfully, all the tests have shown that William has not had any rejection. It's always a relief to rule out the 'big R' but it's only half the story. Infection is another big worry after a transplant, especially infections that directly affect the transplanted organ. Wills had rotavirus but the team feel he has had another, probably norovirus, from about the same time he had his surgery and that his bowel has been grumbling about that before the rotavirus tipped it all over the edge. His bloods were the worse I have ever seen them to be, such a worry when these viruses, although nasty, are pretty normal and, even more worrying, are everywhere!

That snake really has taken us to one of the very first squares. Wills is back on TPN (the IV artificial feed he depended on before his transplant) while we wait for his bowel to be ready for feed again. He is having 5 mls an hour of the simplest of feeds, an 'elemental feed' made of nutrients at their very simplest, single molecule state. We'll wean it up very slowly and wean down the TPN but have a long way to go to the 50 mls per hour William needs. It was upsetting to see him back on TPN and see that white line in his chest again but he's lost 3 kg and needs some nutrition. It's even more upsetting to be away from Hope and Ellie for a prolonged stay in hospital again.

I am trying to remind myself that, although back to the start, we are still on the board. This is not William's own old bowel. This is a healthy bowel that looks great on the endoscopes but has just got a little unwell and needs some time to recover. I just hope we don't meet our nemesis snake again on the way back and struggle to get past that 15 mls per hour!

Seeing things through different eyes

Wow, I have neglected this blog! I changed the name to something exciting and then didn't come back again. Sorry. I will attempt to do better.

Needless to say, we've been busy! I have been very busy writing features for various magazines. I have a real-life health feature in this week's Take a Break (available until Wednesday) and have more due to appear in the same magazine in the coming weeks, as well as Grazia, Cosmopolitan, Mail on Sunday YOU and Woman Alive. Next week, I aim to start a new blog as a companion to my writing. It will contain some 'behind the scenes' commentary on some of the features, together with snippets from press releases and my research etc. I promise to keep this one going a lot better than I have of late at the same time!

The biggest family news since my last blog is that William has finally been diagnosed with Asperger's Syndrome. There is a lot to come to terms with and think about and this will, no doubt, be the focus of many blogs over the coming days and weeks. The main thing I want to say about it today is that I am fast learning Asperger's is NOT a disorder! It's a different way of perceiving the world. William has a higher than average IQ, is creative and very funny - so funny, I think he should be a comedian! He is very intuitive in some ways but he is also has obsessions with things, especially Thomas the Tank Engine and 'disasters', likes things to happen in a way he predicts and struggles with the unpredictable nature of human social contact. He is a walking encyclopaedia on his 'chosen specialist subjects' and can read as well as his 10 year old sister. He has a photographic memory for words and only has to be told a word once and he has it. He would read as well as me if he was told the words, but, of course, wouldn't understand the content of 'The Girl With The Dragon Tattoo.' One of William's biggest challenges is that he is very sensitive to sensual over stimulation. In fact, over stimulation is the wrong word. It's not just that sound is louder and colours brighter. Some children with Asperger's and other forms of autism can actually feel noise as pain and I wouldn't be surprised if Wills feels the same, especially the kind of noise that vibrates. William is very stressed at our church and I fear we may have to find one that doesn't have the bright lights and vibrating organ we have. You can't simply expect him to behave if the environment is physically uncomfortable. Getting the balance right between normal childhood naughtiness and where he really is too uncomfortable will be a challenge. One thing we have already learned is that he can't cope with stopping an unfinished game or TV programme. He really gets very stressed. It's much easier on everyone to give him enough notice of bed time or going out for him to finish his activity and since we've adapted our home life to include that it's all been a lot easier here. I'm looking forward to finding out more ways of dealing with the more challenging aspects of Asperger's - especially how to cope with his 'melt downs.' We had a few of those today when I had to stop a game, for example to change a leaky bag and I have the pinch marks on my arm to show how distressed this can make him. He's always sorry after he's calmed down and doesn't want to react in that way.

Along side his Asperger's, we learned this week that William has delayed cognitive processing. This means that it takes him longer to respond to an instruction or a question. All the small bowel transplant recipients are showing the same and the team now believe it's due to dependence on the artificial, intravenous feed, TPN, when the brain is still developing in babyhood and toddlerhood. William will need longer to complete activities in school and for exams etc. It is heightened for him because he always comes back with complex and complicated responses to things and likes to be funny. It takes him a bit longer to put all that together. This is something else that is very important and useful for us to know about. It's sad that those years when he was so unwell have led to some impact on his development but it's a minor one and to be expected really. As with the Asperger's, my job now is to teach him to make the very best of his talents and abilities and how to cope with his differences and adapt around them so he can make the amazing contribution to the world that I know he can. I wouldn't want to change anything about William. He's a little character and his differences are a big part of what makes him that way.