Big catch up....

Friday +78 Saturday +79 Sunday +80 Monday +81 Tuesday +82 and Wednesday +83

We got as far as putting the anaesthetic cream on his leg before they realised that they really didn’t have enough staff to monitor William overnight with the new medicine and that it would be better done in the day when there are more doctors around anyway so we finally started the infusion on Saturday lunchtime. He was ECG monitored until Sunday night when they decided it was fine. His heart rate did drop a bit low when he was in a deep sleep on Saturday evening which gave Rob and a I a rather startled moment but he ‘self resolved’ as they call it! Anyway they infusions have continued unproblematically. The early effects were miraculous and we had virtually a poo free Sunday but more returned and today (weds) they have doubled the dose. The consultant yesterday did stress how pleased she was that there was any effect at all on the ‘test’ dose and was happy that he is tolerating it so well. Unfortunately we have had a series of minor problems with Williams care since we moved round culminating in a double dose (both IV and oral) of his immunosuppressant (they assure me it is not a significant problem) along with other frustrations some due to not enough IV nurses and others due to busy nurses, new staff members and miscommunication. This has been quite cross making at times. I hope that things will improve on that score. Rob and I had a super long weekend together and saw B on Saturday and I had a coffee and chat with Karen and Stuart, in town for dinner with friends too. The highlight for Rob and William was watching Mist through the snow (the TV reception is terrible!) on channel 5 in the morning (8.40 (that’s am not pm if you are reading this Mr Pepper) if you get a chance it is funny too)). I have been holding the fort today and had a health care assistant sit in with William for ½ an hour so that I could walk around the block. William didn’t cry and played and watched Postman Pat. There was a brass quartet (is there such a thing? Well there is cos I saw one) playing Christmas Carols in the entrance hall today which was so festive it brought a tear to my eye! William’s blood counts are a bit on the low side, he has had neutrophils under 1 for a few days, lower than most times white cells and lower than usual platelets but no one is concerned at this stage, so we won’t be either!? Father Christmas came to Robin Ward this week with an entourage that included a Storm trooper (although Rob assures me it was a biker scout as seen in Return of the Jedi but you know what I mean) an elf, batman and a fairy! He left William a wash mit penguin, a 3 CD set of Christmas songs (the kind that make you think you are in a shop!) and an exciting Postman Pat boating set!? No really he loves it, the little boats stick together in a chain with magnets, can run along the table or wind up to sail in the bath and the figures of Pat Ajay and Ted are removable, he does insist that Pat sits in the blue boat (which is Ted’s) because it matches Pat’s outfit! That Father Christmas is a clever chap. Also excitingly Sir Paul McCartney visited the ward and was by all accounts absolutely delightful with Alice (who has been here ages) and the staff were pretty star struck too. He didn’t venture quite this far down the ward but I did stand only 4 metres from him! Apparently Orlando Bloom was here not that long ago~! Well enough celebrity news, oh no I must tell you there was a quite good looking, young man loitering around with the press people about the same time as Sir Paul was here who came to the window and waved, I assumed he was another celebrity that we didn’t recognise so we waved in a jolly way and speculated about who he might have been. Later in the day he donned a pinnie and came into the room, Rob and I were a bit embarrassed wondering how we could find out who he was without asking and started on a very general conversation and frantically racking my brains for young, northern European males when finally he told us that he is one of the play assistants!!!!!!! That will teach me to get star struck! Ooh and I did see Gok Whan (excuse the spelling say it and you will know who I mean) of How to Look Good Naked fame in Knightsbridge!