Monday, August 04, 2008

Life in the washing machine - William's transplant assessment day 1

William had a great birthday. I never got around to blogging about it but the pictures tell the story of a little boy who woke up determined to have a great day and made sure he enjoyed every second of it. The pictures are all on facebook and here are a few of my favourites. It was a good day but we did miss Hope and Ellie.

Yesterday, we arrived at Birmingham Children's Hospital for our long awaited small bowel transplant assessment. There were major stresses and worries along the way as William had a line infection at the start of the week and we were unsure if he would still be able to come for his assessment. We had an agonising wait for news that he could still come as he was clinically well enough after the first couple of days of antibiotics. However, on Friday we were told that there was no transport available to take us there. An ambulance was arranged for us on Saturday - from the same place as was tried previously to be told there was no crew! All seemed to have finally fallen into place until Sunday morning, just as we were waking up to go. William's TPN pump decided to chose that night to break and fail to charge. We had no battery to get up to Birmingham. With the ambulance crew waiting and me tearing my hair out packing the last bits and pieces, Paul put our back up pump onto a taxi on his way to work and we all prayed there would be enough charge on it to get us there. Luckily there was and we are here at last!
Emily talked about the experience of waiting for a transplant on her blog a week or so ago ( She gave the example of a woman waiting with her father for his heart transplant and how she thought it more of an emotional washing machine than an emotional rollercoaster with all the varying emotions coming at you at the same time rather than ups and downs. It certainly feels like that for us right now.
They are deep cleaning the ward we should be on right now so everyone is on another ward, which has been closed specially so 'ward 8' has taken over 'ward 2'. We will be here until Wednesday when we will all make our way back to ward 8. We are in a 4 bed bay all by ourselves. When we arrived yesterday afternoon we were opposite another family. They had flown from Belfast at 4.30 am following their call for a new stomach, small bowel, liver and colon for their little girl. Of course, we got talking to them throughout the day and shared in their excitement and anxiety - they were well and truely in the middle of the washing machine cycle that we were just stepping into the edge of. It was strange seeing it all happening in front of us. The family leaving to take their child to theatre, the anxious waits for news, updates from the transplant coordinator, relief that the operation was over and things had gone to plan... It has made this whole experiencee of assessment seem so much more real. It is also less scary in a way as I have seen a little girl go off to theatre, heard from her parents of all she has gone through and know that she is now in intensive care doing well. There is another family here who have been in to have their son's stoma reversed as he is doing so well 3 years post transplant. I got to know the Mum though the transplant kids forum and it was so lovely to have someone to look out for and say hello up here. Paul was here yesterday and today but can't be here now until next Wednesday and then only for the day. I did feel very lonely and daunted when he left.
On arrival yesterday, we were given a schedule for all our sessions and tests this week. Today, we started the day with a dental check for William. This is to make sure there is no infection in his mouth that could cause problems while on anti-rejection drugs. All was well there but we need to be seen here every few months if William is listed- all the way to Birmingham to see the dentist! Next, William had a developmental assessment, the Bayley's assessment, with the physiotherapist. He passed the cognitive section with flying colours but dis not do so well physically. This was just what we would expect and she was happy that he is fine for transplant from her perspective. We had time to grab a very quick sandwich and change William's stoma bag before Paul and I left him having his IV antibiotics and went for a pre-transplant assessment with the clinical psychologist. This was to see how we are coping and how all the family are coping and will cope with a transplant. We have had so much time in hospital lately that we have worked through most of the practical issues and I think we impressed the psychologist with how many contingency plans we already have in place. Life has been very unpredictable for a long time with a constant possibility that William will be rushed to hospital at any time and stay there for several months. A transplant won't bring anything new in this respect. We returned to the ward and met the play specialist who explained what she will be doing with William this week and with the girls in the future. We then escaped to look round the shops. Apparently, we were called for a chest and wrist x-ray as soon as we left the ward and the neuro team came to see him when we were out. They are coming back tomorrow, one of our 5 scheduled sessions of the day! I was told this process was intensive!
As ever, William is taking it in his stride. He woke this morning and told us straight away that the little girl had her new tummy and now we are going to see if he can have one so he can have a picnic. Later on, while on his way for a bath, he spoke to the boy in for his stoma closure. He had just two questions to ask
"Have you got a new tummy"
"And do you eat"
"Yes (his Mum adds he is eating pizza)
"Uh" (William grunts with satisfaction, a big smile on his face as he toddles off for his bath, apparently with all the information he needs)


Katie H said...

I'm so pleased to hear that William is taking this daunting process in his stride, and hope that you, Paul and the girls are able to stay positive throughout as well. I've followed your journey since meeting you at the CFT walk in Crystal Palace several years ago, and can honestly say that your family has been in my thoughts ever since. I do hope that Birmingham are able to accept William onto the list, and that your 'washing machine' journey does indeed allow William to enjoy many a picnic in the future. Katie

Sarah L said...

William is such a brave little soldier. Fingers crossed that the washing machine journey goes as smoothly as possible for you all. Stay strong Sarah x