Sunday, August 10, 2008
We had a break from tests and meetings over the weekend. It was a very welcome interlude from the intensity of transplant assessment but I met it with a mixed response as I would have liked to get on with things. William enjoyed his break. We went to the Sealife Centre yesterday and then onto the art gallery. It was very busy in the Sealife Centre, due to the typical British summer weather. I think Wills was actually a bit overwhelmed and was much more relaxed in the quieter art gallery. It is lovely there, free and very interactive. I think I will spend a lot of time there if we are here for transplant. William will be isolated for 6 months to a year post transplant so we need to get in as much as possible now. You need to take double doses of anti-rejection drugs following a bowel transplant so infection risk is much greater. That is the bit I am least looking forward to if we are listed following this assessment. William will have to remain at home for this initial period - no shops, church, school, outings apart from a park if it is very quiet. Thank goodness for internet shopping!
Today, Paul came up for the day. We wondered around the shops and played for a while in the sand at the Bullring Beach. William chose a cooking book from the book shop. Perhaps we will be able to talk about eating the food as well as making it after we have got through this coming week. After a brief pop back to the hospital for his IV antibiotics, we all went back to my hotel room and enjoyed hanging out together there. We are all now bracing ourselves for this week. Lots was postponed last week and we now have 5 information sessions with the liason nurse, meetings with the dietician, gastroeneterologist, transplant co-ordinator, anaethnetist (I can never spell that word!), surgeon, stoma nurse.... , numerous tests including biopsies, endoscopy, vein CT scan, kidney function test, ultrasounds... and then, the final meeting to receive the recommendation (or news that further tests are needed and we have to come back again!) It is going to be quite a week! It is dawning on me now how big this is. You get so used to the idea of a transplant when it has been forecasted for over 2 years. You think about it, talk about it and meet lots of people who have been through it and it all becomes a lot more normalised and seems like just another operation or treatment option. It isn't though. It is a pretty big thing really. The information sessions this week will tell us just how big that is. At the end of the week, if we are not asked to return for further tests or wait for outstanding results, we will be told either William is not yet at the stage where a transplant is immediately essential or that they recommend a small bowel transplant or a liver and small bowel transplant. I wish I could fastforward to Friday now.