Home Straight

Wills is continuing to do really well. So well in fact, that we are now on the home straight. We have now entered the discharge planning stage. With something as complicated as a transplant, it is not a case of simply saying that you are fit to go home and off you go with a bag (a very large bag) of medicine. William's initial post-transplant care will be complex and involve a lot of people here in Birmingham and back home. A discharge planning phone conference will take place next week, at the earliest opportunity when everyone is back from Christmas and New Year leave. Feeding equipment, medicines and the components needed to make William's special 'MCT modular feed' need to be ordered and I need to be trained in making the feed, the 14 medications he will go home on and what to look out for and be concerned about when we are home. All this will take more than a couple of days but we are hoping to be home within a couple of weeks.

One issue that needs to be sorted first is the button gastrostomy in William's tummy. It is a special one with two ports that go into his stomach and just below into the bowel. He no longer needs the extra port but we were set to leave the tube in until it naturally needs changing. This time may have come sooner than planned. As his tummy is now not so distended as it was before transplant the tube doesn't seem to fit the hole in the stomach wall so well. It is fine during the day when he is upright but, in certain positions over night, the feed pours out through the gaps in the hole. His stoma is still swelling 3 time its size during the day and prolapses a bit. It all goes back to normal over night so we hope it will be fine. These are just gentle reminders of the exactly what his little body has been through. Although William is as well as possible and everyone is really pleased with him there remain just little bits and bobs to tweak.