Monday, July 14, 2008

Meanwhile, back in the real world...

Ellie is still floating on the ceiling - she really is!!! (See blog entry on Friday 11th July for the full story) She is so happy. Meanwhile, in the real world below, it has been a very busy day. William's new school teachers came to visit this morning. Getting William to school in September is proving to be a mammouth project. He is going to the special needs school for physically disabled children but even they are very worried about the level, complexity and fragility of his medical condition. It was decided at the 11th hour, right at the end of this term, that he needs a one to one health care assistant to make sure he is well and safe. Luckily, it looks like the wonderful lady who comes to play with him two mornings a week will take on the role. She loves Wills to bits and it is very much reciprocated so everyone will be happy. We just hope all the practicalities and training can take place in time. While the medical team are fretting, his teacher is more than happy. William is very interested in learning and already reading.

Shortly after the teachers left, we had a very special delivery - William's long awaited electric wheelchair. He has been in hospital every time we were due to collect it and, when we finally managed to get there, one of the functions was not working. Thankfully, it can be driven from the back so I can keep control while he is learning. This didn't stop him managing to switch it off while we were half-way into getting off a tram to pick Ellie up from school. It took 6 people lifting and pulling frantically to get him into safety before someone noticed what he had done! He hasn't found the horn button yet but I'm sure it won't be long! I can see we are going to have fun and games getting to grips with it. I think we will stick to the buggy whenever we need to rush anywhere. It will be great in the classroom though as it will give him independence while he is stuck on his TPN. For now, we are sticking to safe places, like Ellies school playground, before letting him take control of the joystick.

William also had bloods today. Thanksfully his liver tests have stabilised and even improved a tiny bit. This is good news as the transplant team in Birmingham want to assess him before making plans to remove the gall bladder. It still needs to come out but they want to decide how to do things in the context of decisions made about transplant. The more surgery a child has prior to the transplant, the more complicated things can be so it may be that the gall bladder and liver situation is assessed as part of the whole of his condition and incorporated into the speed at which he needs the transplant and where he is placed if listed. If it is likely that he will get a transplant relatively quickly, we may be able to wait until then before the gall bladder is removed. If they do feel the gall bladder operation needs doing more quickly, they may well do it themselves. Everything now rests on the assessment, set to take place in a few weeks time. We have been told that we need to bring him into Chelsea and Westminster if he seems to be in a lot of pain or gets fevers. Apparently, he could get a sudden and serious infection due in the gall bladder or the blockage in his bile duct could suddenly worsen. As ever, we have the risk of sudden line infections and another risk of him becoming suddenly and severely unwell along side it. It is so hard to get the balance right at the moment. Hospital bags are packed and contingency plans in place. He is having his ups and downs at the moment but is OK. I just hope we can hang on in at home for another couple of weeks so Ellie and William get their birthdays at home and all together. Hope is worrying about us going into hospital. Ellie is blissfully protected in her bubble of lovely memories and lingering excitement from Friday. I just it doesn't pop too suddenly. She would go down with a bump.

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