News from fox....

Monday +32 and Tuesday +33 (and Happy Birthday, (Great!) Uncle Stuart!)

William was sick on Sunday and Monday evenings, boo. He has been nibbling on rice cakes but not much else. He refuses his chocolate milk now too. Today (Tuesday) he has refused his generously portions half slices of wheat free toast with Marmite too and has hardly drunk anything so they have just dumped (well, over an hour) 100mls of water down his NG tube so we will see if I get to see that again later, he is sleeping at the moment so who knows? Sadly, Jack didn’t get to go home today as he was sick a few times and they need to be sure that there is nothing sinister brewing before they let you out. William seems to be holding his neutrophils levels just less than 1 at the moment (they like them to be more than 1 (maybe they are sociable things!)). As of Monday, they are reducing one of his immune suppressant meds. This will release the T cells from his new donor immune system so hopefully they will start fighting the virus, boost his neutrophils and white cell levels and generally make themselves more at home! There is a POSSIBILITY that we will be transferred to a local hospital in a week or so. If we can get off the TPN (which would mean W was able to eat, drink and digest enough nutrients etc) we could even go home!!!!!!!! If we can’t get off the TPN that soon (and to be honest it doesn’t seem like a real prospect at the moment) then we may go to Bristol Children’s Hospital (they are a BMT transplant centre and we do know the Immunology Consultant and his team there, who does have previous experience of WAS transplant children). I am assured that they would work closely with GOS and it might save us outpatient trips to London, if we can go to Bristol instead. Lucy next door may do the same to her local hospital. I think they want to clear a few beds. There must be a lot of poorly children waiting for a space on the unit and if our needs are more post transplant and nutritional then it’s right that we move on. I will keep you posted, we did mention to one of the more senior nurses today, looking for some confirmation/clarification who said, and I quote ‘sometimes the doctors do get some funny ideas in their heads’. It is generally advisable to hear the same version from at least three sources before getting too excited about anything (even the availability of straws, which incidently there isn’t any availability of (again! (did any of that make sense))) The exciting news of the evening is that the buzzers are working!!! Buzz buzz…although having pressed mine over 10 minutes ago am now not quite so sure! It is a very busy time and the evening shift take over in 20 minutes or so. Earlier there was a rather scary moment on the corridor when Eldaras’ mum pressed the emergency buzzer and the doctors and nurses really did appear from nowhere within seconds (which was v impressive and quite reassuring). He is fine (well fine ish) he has a v high temperature, chest infection and had his marrow yesterday his monitor was showing quite low oxygen levels, hence the panic but the levels are back up now.Apart from all the medical stuff W remains very much ‘himself’. He had a lovely time with Grandma on Monday whilst I had a scrummy lunch with Bryher. He enjoyed watching University Challenge last night (it was, post being sick recuperation time for the two of us)! He had lots of fun with Daddy today whilst Mummy went on a shopping mission for birthday presents, treats for herself and a lovely fleece for W for Christmas, or as a going outside again present! Today he made an Excavator out of mega blocks and pointed at the one on the TV then to the one in his hand! Who knows what tomorrow holds.