Days full of optimism and nights of fear

William's infected hickman line is now out and we are hoping to get a new one in on Friday. He has been existing on IV fluids only since Saturday so we really hope the new one goes in OK on Friday. Hope and Ellie are coming home the next day and I was hoping we would be able to come home too. Unfortunately, they want to make sure the new line gets as good a chance as possible not to become immediately reinfected by William's gut bugs, as has happened on many previous occasions, so we have to stay in for another week of IV antibiotics. This is heartbreaking. I haven't seen the girls since the last week in July and was really looking forward to us all being together again. I will see the girls on Saturday but Paul has the end of the Glynebourne Festival and is away singing at a funeral for part of next week and Mum and Dad are away so the poor girls will have a week of 'box and cox' arrangements to start their term. I wanted to do the IVs at home but the team are not happy for us to treat the end of William's infections at home any more. I am so upset about it but I know the team here have to do what they have to do to give William the best chance of staying well enough to be on the transplant list as much as possible. He has to be de-activated when he is poorly with infection. Everyone is hoping he gets his call soon as these infections are just coming all the time now.

William is listed for transplant the day after tomorrow and it is really beginning to hit home and feel real. The bag is packed abd Hope and Ellie's overnight bags are waiting on their beds. The lists are written and people have kindly offered to be part of contingency plans for the girls. During the day time, the transplant seems a very positive thing, not least as all the staff here keep on saying that he really needs it and we hope a donor is found soon and also that he should do really well. It is very easy to feel optimistic about things during the day. The terror of what could happen if he doesn't do well engulfs me at night as I am trying to sleep. It seems to be an occupant of the darkness and the time between being awake and asleep. It is only natural to feel worried about such a huge operation with life long implications. I'm sure I will get used to this 'life in the washing machine' and emotions will even out as I do so. In the meantime, a nice mug of hot choc (even better if after a glass of wine) and a feel good novel seem to be the best strategies for bed time.