Friday, 14 December 2007

Chirpings from the old bird!

Friday +71 Saturday +72 Sunday +73 and Monday +74 (and twelve, yes TWELVE weeks here aaaaagggghhhhhh) (I think Rob's posting covered most of this already but as I wrote it, you can read it, or not!)
It is Monday evening and we are relocated to Robin as of this afternoon. The room is a bit bigger and we have, not two but 3 chairs (but no socialising in the corridor). One of the aforemention chairs is a rather charming wipe clean supersized armchair affair that turns into my bed (albeit much narrower than the chair) so I just can’t wait to find out how comfy it is tonight! Otherwise we have rehung our decorations and moved a few things around and we will be fine here. The consultant even came by this afternoon to go over the plan and say hi which was great because Rob hadn’t met him before. We also have exciting (?!) double doors with flashing red lights and you have to wait in the middle where you can also wash hands and don aprons until the light stops flashing before you go out. William has been fine for the past few days, it’s mostly been about fluid balancing because of the continuing diarrhoea. They are tapering off his steroids to release the T cells to fight the virus and (if this process doesn’t also land us with GVH) then they will reduce the Cyclosporin (the other immunosuppressant) which will release more virus fighting forces. This may take a little while, they can’t just stop everything or he would run into problems but at least there is a clear plan.
I went over to Tasha and Jim’s flat in Wimbledon on Saturday for lunch which was very exciting but even more so because it was the first time that I had been in anyone’s home for almost 12 weeks! It was a very nice afternoon and was most revitalising! I had been/was/am (?) getting a bit stressed and cross with the whole you are moving rooms, you are not moving, oh, yes you are, the doctors saying that they would come back and then not and that kind of stuff. Maybe this change of scene will help. I know that in the big scale of things we are doing SO well and we are incredibly lucky to have had this transplant. We do have a way to go yet but a few weeks more are really such a small price to pay.

Tuesday +75 Wednesday +76 and Thursday +77
We had a lovely visit from Granma on Tuesday afternoon, Poppa was banished for hours to the coffee shop due to a nasty cough but later was allowed to sit on the same table as me in the restaurant as long as he didn’t cough on me! On Wednesday William caught up with Uncle Nick and Grandpa and I went out to lunch with them and Phyllis too which was super. William had a top up of blood last night. Today the consultant have been around and they have a plan! It is almost 4 weeks since William has had anything to eat again or any milk and really we are no further forward. They are going to start him on a medicine which will reduce the secretions (that are the content of the diarrhoea (why can I still not spell that without the spellchecker? It has been a recurrent feature of our time here!)) in an attempt to stop the flow! They don’t usually use this medicine and seem quite serious about it all. They have taken an x ray of his tummy before we start as it can cause swelling. Also it can affect the blood sugars so they will be monitoring them too. It will be a continuous subcutaneous infusion and they start with a super tiny dose to check that he can tolerate it and then move on to a more hefty dose. After a week or so, if it works they can give him a different version if he needs it that would be more long lasting or see if his insides have repaired themselves sufficiently to start some milk again or to see if the virus has been annihilated! It is good to be trying something different rather than just sitting around waiting for lymphocytes!! William has been very jolly this week and charging around (lines permitting) so is still in good spirits.

2 comments:

Anonymous said...

Do hope that new location and new virus fighting tactics work to help W's digestion recover. Sorry you can't see them, but the KFN Chrimbo decs are up and to their usual high/low standards! We are now consuming mince pies on a daily basis........
KFNx

Aimee said...

Greetings from California. Just checking up on you and your little one. +74 days! Wow! You've been there a long time. Hang in there. Things will be much less stressful when you get home. You do a great job doing things for yourself, like visiting friends and having your mama help out. We will pray.