It's been a very long time since I posted on here and I'm really sorry for the lack of blogging. I will be blogging daily from now as I have lots to share with you. I just couldn't bring myself too over the last couple of months as they have been very difficult ones.
My last post was all about how, overall, William's third post-transplant annual review had gone pretty well. We were looking forward to a wonderful Christmas at home together and Hope had even said 'everything is perfect - even our Christmas tree is perfect!' (which it was). On December 20th, we all got up to go to William's school nativity play as the girls had broken up a few days before him. William woke with a temperature and tummy ache but a dose of calpol seemed to do the trick. He wasn't great but I wasn't too concerned and he wanted to do the play so we set off. From the audience, I watched him look greyer and greyer and the bulge from his stoma bag under his T-shirt get bigger and bigger. I couldn't wait for the play to finish and get to him when, to my horror, I saw he had lost nearly a litre of fluid through his bowel in the hour the play went on for.
By the end of the day, Wills was very poorly in hospital. A simple stomach bug can be devastating for a child who has had a bowel transplant and I hoped we'd ride that for a few days in be home for Christmas. Within a few days it was clear we wouldn't be so we hatched a plan to make sure everyone could make the best of it and I and the girls and his Dad and his girlfriend would all have time with him and time at home for dinner. On 23rd December, they decided he was too poorly to stay in our local hospital and he was blue-lighted to our transplant centre at Birmingham Children's hospital - and there we stayed until last weekend! William had a bug and a bit of rejection (very minor and caused by the bug stopping his anti rejection medications being absorbed properly) and was shedding weight and fluid so quickly he had to go back onto TPN - the intravenous feed he survived on before his transplant. The bug was a nuisance and very stubborn, to put it mildly, and William is still on a 24 hour specialist feed but, thankfully, now into his gastrostomy - the hole in his stomach. He still has his Hickman line in for bloods and in case he needs anymore TPN or IV fluids or drugs but he's doing pretty well now. His bowel isn't quite as good as it was and we're just waiting to see if it improves and juggling drugs to slow it down so he can absorb as much as he can with reduced function.
There are lots of stories and photos to share with you from our adventures over the last months. A lot of the time he was well in himself so we made the best of it with trips to Cadbury World and even a VIP day at a fire station. There is lots to tell you about the experience of sharing Christmas and New Year in hospital with other parents facing huge uncertainties, and a second Christmas in February, about the amazing work Ronald McDonald House do in keeping families together in hospitals, about hospital routines and how discovering Downton Abby kept the girls and I sane! All these I will share over the coming days.
The biggest upset was that I had to send William's beloved Oliver away on holiday with an amazing family who responded when my friends put out a desperate plea for me to find someone to have the dogs kind of immediately! We had never met them but they are now close friends who stepped up and helped us when we needed it the most. As William still has his line and I am accessing it at home and because I was reminded of the uncertainties in his life I do my best to forget most of the time, I had a heart wrenching time making a long term decision about Oliver. Oli is currently being spoiled in the New Forest with a family willing to keep him...But Oliver and Wills have an amazing special bond...William could get unwell again within months of getting Oli home which wouldn't be fair on anyone....but he may stay well enough to be home for much longer.... I was going round in circles - until yesterday when a film Wills and I did about his autism at the end of the summer was shown on ITV's This Morning.
You can see it here, about 26 minutes in (for the next 6 days). I'll come back to the programme again tomorrow as there has been some interesting discussion on Facebook and twitter about how great it was in portraying autism and what it lacked (including William's amazing intellect, humour and sensitivity but I can understand why in such a short film). He really isn't that challenging most of the time, although he was before we got Oliver and he has had a lot shorter fuse in the last couple of weeks since we've been home without him. We were due to be visiting Oli tomorrow but we aren't going now. Instead, Oli is coming home. I'll put a huge piece of dressing over William's line to fully secure it so Oli's paws won't catch it, Oli won't be allowed in the back yard as it means walking, dirty, through William's room. We'll have to walk him up the road every time he needs to go out and take him on trams and trains to bigger and more exciting parks and countryside now he's been spoiled with daily walks in a forest! Maybe a dog and a Hickman line presents challenges but the film reminded me that physical health is only half of William's story and what Oli does for his autism is worth every second I will be spending on my hands and knees with alcohol wipes! Wills never stopped talking about Oli when he was in hospital. He is part of him and something of Wills is missing when he isn't here with us. Of all the things I've tried with William - sand timers, endless charts, sensory toys... the only thing that made a significant and permanent difference was Oliver and we have missed him so much.
If you saw the programme on This Morning and wondered how a dog could help your child with autism, please get in touch with Dogs for the Disabled who can invite you to a workshop about training your pet dog (and child ;)) to help. There is more info about them and their PAWS (Parent, autism workshops) here. They are fantastic. I couldn't recommend them highly enough.
Ideas, insights and stories about life in families where a child lives with special needs, such as physical, sensory and learning disabilities, chronic illness, autism and ADHD.
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