We are all back on ward 8 - the liver ward, following the deep clean. We are on a bay with 3 babies who don't sleep through the night. The nurses seem to like to talk in daytime loud voices too!! Poor William couldn't get to sleep as the main lights were still on at 8.30. He does need his routine. I like the ward at our Chelsea Pad as, even on the twin bays, there are seperate lights for each bed space. I think I am going to opt to sleep at the hotel and get up early, before William wakes.
William got to work learning about his assessment for a new tummy and Thomas' assessment for a new engine today. He went down to see the CT scanner as he will need a CT scan of his neck veins later in the week and they want to avoid doing it under anaesthetic. I met with the transplant nurse specialist today who explained that this is the crunch test for William. If it confirms his veinous access is very limited, he will be listed for transplant. If there are a few places to put lines they will think about whether or not he should be listed with all the line infections he has been getting or if we should stay as we are for a while. She also explained that he will be having an endoscopy to see if he has any varicous veins inside that may indicate liver damage. If he has them, he will need to be listed for a liver as well. If not, he will have a liver biopsy to see what stage his TPN related liver disease is at. If it is stage 1 or 2 he will need only a bowel (if anything) and if it is stage 3 or 4 he will need both liver and bowel. So, he could end up not being recommended for any transplant at all, he could end up being recommended for small bowel or could end up having a liver and bowel. The encouraging news is that she gave an approx 70% chance survival at 2 years for his age and size in either case. If you have survived 2 years you have an excellent prognosis for the future.
William had an ECG and heart echo today to check he is fit for transplant there. He also had a cognitive assessment with the psychologist. She has requested to see him again on Friday as they didn't finish the test - no doubt because William took her off topic several times. His sense of humour is becoming well known here already. He announced to the play specialist, Kerry-Anne that he was going to call her 'Kareoke'. He couldn't answer when she asked him if he knew what that meant but said he was going to call her that anyway.