Tuesday, April 11, 2006
Finding his shadow!
William discoverd his shadow yesterday! It was hilarious - he kept flapping his arms and watching the shadow do the same! He is loving getting out with his sisters over the Easter holiday and they are really bonding more now they have had some time at home together.
Paul and I watched a programme on TV last night about the vicar who lost her daughter in the 7/7 London bombs. I wept and wept my way through the stories of parents learning to cope with their child's sickness or loss, even Paul shed a little tear. I was so moved by her search to make sense of her loss and her ability to draw so much from those she was talking to. We ended up talking about our deepest hurts and fears (over a bottle of wine!). The thing that scares us the most at the moment it how William can so suddenly be at threat from line infections, or even an air embolism, with the TPN. It is especially upsetting that we would have been then ones that would have carried out the action that could cause such an event. This makes everything we do with him so much more stressful, especially when we are tired and not thinking straight! We still have to change William every 3 hours over night and he has stopped sleeping through as well. The fluid through his bowl builds up overnight - you should see that state of him, his clothes and the bed in the morning! I think this is beginning to make him uncomfortable. He also gets a lot of back tracking into his stomach overnight and I think he can feel quite sick. Sometimes I wish they would just do the illeostomy to relieve him but I know this would be detrimental to his transplant outcome if that is where he ends up.
William is continuing to have blood and "coffee granules" (or tiny bits of stomach wall) in his gastric aspirate. We are now giving his IV omeprezole twice a day but may have to add in IV ranitidine as well if this continues. They are trying to avoid it though as every time we go into his line is an extra chance for infection. We have clinic next Friday to review this. We also need to review his weight gain which is actually a bit on the fast side right now! To think he was losing so much before he started TPN - he is now a little bruiser and may need his TPN calories reducing now he has caught up with himself. All children on TPN seem to have little "hamster cheeks". The fat from TPN seems to be stored in certain parts of the body - especially cheeks and thighs. All the parents joke about these features, together with their little pot bellies from the distention.