Thursday +42

Robs train was very delayed this morning due to a fatality on the line but he got to us in the end at around 11. William went to sleep 45 minutes later with a temperature of just over 38 and Grandma arrived shortly after. Rob and I went off for a delicious meal and a short walk (mostly around Waitrose)! It was great to take a break together. William has been given some antibiotics as a precautionary measure although they have taken a nasal swab and blood cultures they like to get a pre-emptive antibiotic strike in rather than wait for results. His temperature has come down a bit now. Rob and I had our going home talk today. The going home guidelines are pretty comprehensive. Apart from all the medicines, community nurse visits, milk feeds and hospital follow ups there is quite a lot that we need to be careful of for the first 6 months post transplant until the magic day when those lymphocytes get going. The talk took almost 2 hours and we didn’t cover the medicines or milk feed aspects! There are quite a few restrictions about food and contact with ‘strange’ people in public places. The good news is that we can welcome healthy visitors to our house! Interestingly the different transplant centres in the UK offer different guidance. GOS say that all fresh fruit and veg is fine but apparently Bristol say only tinned or frozen for 6 months!? The team here have spoken to both Bath and Bristol so we will be in safe hands if we ever need local help and we can call here 24 hours a day for advice too. Coincidently Lizzie (immuno nurse specialist) called during the talk and we will be with Prof Adam Finn (as seen on the news this morning by my Mum talking about chicken pox vaccines!) who we know has worked with WAS transplant children in a previous role (his role now specialises in Immunology) and we have seen him and his team previously in clinics so that’s good. There’s lots to organise with the local community and hospital nurses but Nikki was very impressed with how helpful and positive all the people that she needs to liase with in the west country have been. I put William’s evening medicines down his NG tube for the first time! The scary bit is drawing them all up which I have to do tomorrow..ahhh..hope we get one of my more favourite nurses! We also made a landmark move to oral Aciclovir today! Only one IV medicine to go (not counting the antibiotics that he started today!). I have just spoken to Jill, Jack’s Mum who says that it’s his first birthday on Monday. It’s such a shame, they were so close to going home before he got the virus and now I think they will be at least another week or so. I stood there thinking that I was sure he was only 10 months old but then realised that of course he was when I first met them!! Time in here feels like it has stood still a bit, but that ‘other’ world keeps on turning. I believe it is now definitely Autumn and that we are hurtling towards Winter and Christmas!!