Thursday +63

Well a bit of paracetamol put pay to the tummy gripes and we both had a good night.
Today has been mostly spent waiting for things to happen and then, of course, they all happen within ½ hour of each other. We met one of the endoscopy/colonoscopy nurses who will be with William tomorrow who seemed very nice and explained the procedure. It looks like we will be in there about 10.30 and it takes about an hour to do both ends! We can see him immediately before and after and even during (although I don’t think we will) he will be heavily sedated and the medicine that they give makes you not remember so he won’t know whether we were there or not and I think it would be distressing to see (think that might be an understatement!). He has had to have a laxative (cos we really need more poo!) and we didn’t quite understand why because he is not eating or having any milk, so they rang to explain it to me (which I thought was excellent). Apparently they really need to be sure (extra sure) that he is empty so that they can see the walls of the pipes and get the best picture. They will also take tissue samples for biopsy because the microbiology will confirm which damage is GVH and which is the virus and any other exciting things that they find (they may find a sequin as we think he ate one earlier and I haven’t seen it again yet!) The laxative has not had TOO drastic an effect (yet!?), there can’t be anything in there extra to come out! Although he does keep opening his bowels as I am changing him with dramatic effect! The new (2nd consultant from immuno and we only joined them last week!?) consultant came by today and didn’t say much really, he did look in Williams ears (which are fine) because he is very unsteady on his feet, walks like a drunk (and I should know) and needs to hold onto something to bend down (both of which he demonstrated very well whilst the doctor was here. They will review his medicines and see if any of those might be causing dizziness or something. Williams kidney function test (the Urea) is a bit high again today although his Liver is much improved. If it’s not one thing it is another! They will keep him hydrated and stop one of the meds for a couple of days (Aciclovir) that is particularly hard for the kidneys to process and hope that things improve. The play assistant also came by today and much fun was had with aforementioned sequins and glue. I finally got out for a breath of fresh air after 4pm. The last couple of hours have been hectic (we let Mum off early for good behaviour because Rob is coming tomorrow morning because of the procedure) so she went to catch her train having helped clear up the pre bath nappy explosion situation (nice!) then we had bath, mouth care, exciting new tractor stories, obs, tpn fitting, the bin lady and now sleep, phew. He will be having a drop of blood later as his haemoglobin is a bit low so they need to crack on and get the other IV meds in first so that it doesn’t take all night!