More from Fox Ward

Wednesday +6
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.

Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.