How hard it is blogging in London

Friday
Well as you know I made it to Starbuck and got the blog updated. Hoorah. Today has been pretty frantic and there is still stuff to happen. William had a very red ear this morning, which the consultant thinks is a small localised tissue infection and he will be having IV antibiotics when they get delivered later on. The swelling has since reduced considerably and the colour improved, he is already on several antibiotics and anti inflammatories, which may have helped. William had his Campath again today and once again as the flush was going through he came up in a few itchy blister like patches despite having had extra steroids to reduce this likelihood of this happening. Anyway they gave him some more antihistamines and we popped some hydrocortisone cream on and they soon improved. William had his Fludarabine and Treosulfan today, which went in smoothly enough. The main issue at the moment is stopping him getting tangled up in the tubing and chasing after him with the IV pole (which has 5 wheels, that impressed Hannah!) He went to bed at his usual time and is currently sleeping through a milk feed that they are giving him through his NG tube straight into his tummy. They gave him some water this way this afternoon and I think it filled him up so he didn’t want his tea. He needs to get a lot of fluids to protect his kidneys and this is the usual way that they help us to achieve our fluid target (I haven’t had one of them since my University days and then the fluid wasn’t milk or water!)
These are the serious drugs so today was a bit of a milestone, there really isn’t any going back now (not that it would be an option anyway) and we have very little idea what the next few days and weeks will hold for him.
Spoke to the dietician today, who will help us to keep William ‘well nourished’ and also the ‘Green’ kitchen lady. William will be on ‘Green’ food from Sunday now (from the special kitchen) and he can get kit kats and cakes and make special requests but I haven’t told him that bit yet or he will just be ordering puddings!
It was great to have Grandma here today, that extra pair of hands is invaluable. There is a fairly constant stream of nurses in and out and a considerable amount of prodding. The time really does fly by. William is still to have his antibiotics and his IV immunoglobulin this evening (this replaces the sub cut that we were doing at home and lasts three weeks) and I am trying for an early night. There was a small debacle with a couple of nurses and several fluid bags which woke W last night and a very soggy nappy that had to be changed so it was quite a late night by the time he finally got back to sleep. Haven’t seen the night shift staff yet so I expect they will pitch up as soon as I get my pyjamas on!
BFN Catherine xxx

Saturday
After a very disturbed night we were very happy to see Daddy this morning and he brought with him lots of cards and pressies. So thank you all. William has a new cuddly who looks just like Gillie and more tractor teds so that will help to ring the changes and some interesting new books too. Today has been busy with more doses of the Campath, the Treosulfan and the Fludarabine. His ear is very much less swollen and discoloured and he had no reaction to the Campath today, which is great. I had a lovely break with Tasha who treated me to a delicious lunch and we had a great chat and wandered around the local area a bit so that I can get my bearings and we now have a secret stash of Divine chocolate! Popped down to update the blog but of course there is nowhere to stick the memory stick in the hospital computers so I will try and think up another plan but will pop for a coffee tomorrow cos Daddy is coming back (hoorah!) Not much else, he is having a special milk feed again tonight but they are going to put it in a bit quicker because yesterday he was full up at breakfast time so that may help otherwise I am worried that he will get into a viscous circle of not eating and needing more milk feed overnight then not being hungry, you get the picture. He was much closer to his fluid target today though.