Saturday, August 05, 2006
Back from hospital
We are back from hospital. William managed to grow not one but three bugs in his line! He has been off his TPN since Monday as it is bug food as well as William food. His temperature is down cultures are now clear so we are home but on 3 lots of IV antibiotics. These pictures show how many drugs will be given in the next 10 days and how many he has in one go. These are given every 6 hours - a lot of work but I would so much rather have him home when he is well. He really was feeling very poorly at first, with a temp that kept spinking to 40 degrees. A blood transfusion gave him some energy and made him feel a bit better but he is still very tired and "lack lusture" Not himself at all! He is also neutropenic at the moment, meaning that one of the white cell counts is very low, leaving him susceptable to infections and struggling to fight them when they come. We have to keep him away from busy public places and other children until this improves as certain viruses and infections, such as chicken pox, could be really dangerous for him at the moment. We are all really hoping we get these bugs licked before this line gets colonised. We have been warned that two of them, pseudomonas patatas and acinobacter, can be pretty tenacious. It is a bit of a worrying time, expecially when we were only told on Friday that line infections, losing lines and running out of sites is a key concern for William.
Meanwhile, Paul has been up on crutches today and is pretty confident that home by Friday is not an impossible hope. If not Friday, it will certainly be the start of the following week. His main problem at the moment is that he is a lanky lad with not too much power strength - more your distance runner build. The orthopedic specialist nurse said the "footballers legs" progress quicker at this stage. Still, he has progressed from feeling dizzy sitting up and not manageing to stand for long to 2 laps round the gym on crutches in a week so this week could see a lot more progress. He now has to get stable on crutches, get a bit more stamina and learn the stairs. William has his physiotherapist on Monday coming with some Piedro Boots she has in the hope a pair will fit to keep him going until he gets his own with the special insoles. His neurological and cognitive issues are becoming yet more apparent and were discussed from time to time in the hospital. Everyone seems to think things are becoming clearer. We are all awaiting the results of an MRI scan in September to rule out any structural brain damage and the geneticist in a few weeks time. We have a physio and speech and language therapist now and he is on the waiting list for OT. He will start Portage in September so he is getting a lot of help. The speech and languate therapist came Monday, before he got ill. She was able to tell his understanding is poor for his age and he can only understand one word at a time. She will work with him fortnightly to see what we can do. This is all very helpful as it helps us to tailor our behaviour with him to help him get the best he can from things.
Hope and Ellie are enjoying being on Grandma and Grandad's narrow boat. They are having loads of fun. I really miss them but they are best off being where they can have fun rather than have their summer holiday dominated by IVs and mechano leg. I hope next summer is an easier one and we can all get away and have a good holiday!