The weekend

Saturday +37 and Sunday +38 and Happy Birthday Rob!!!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!