Thursday, December 04, 2008

Our Nemesis

I am sticking with the snakes and ladders analogy. I like it. In fact, if I ever write a book about all this that would be the title. We have a nemesis snake that just won't let us progress from the first line on the board. We get along a few squares and there he is. We land on him every time and he takes us right back to the start again. William's stoma has stopped again and the poor thing was wretching and in loads of pain until we put his jej and gastrostomy tubes onto free drainage. Several hunderd mls of bile poured out of each so his diorylte has been stopped again and he has been left on drain. Off we went to x-ray yet again. It seems William has some more kinks and/or adhesions in his bowel, preventing things to run through properly. We are all hoping that it will decompress with the drainage and, in doing so, shift a bit and correct itself. If not, Wills will have to go back to x-ray for some contrast studies where dye is placed in the gut to follow it's progress and see where any blockages are and how severe they are. There is the chance that he will end up back in theatre again if this doesn't resolve itself.

We may be stuck on square one with feeding but William is doing heaps better in himself. He made some videos with the school teacher and I am hoping to be able to put them on the blog so he can say hello. Physiopherapy is a huge part of transplant recovery, especially for someone like Wills who also has his mild cerebral palsy. He did really well today and sat on the edge of the bed to play catch with a nice soft ball that won't hurt his tummy and even sat out on a bench and did some wobbly stands. He needs a lot of encouragement to get going with things as he is feeling yukky and weak and would rather stay lying in bed all day. Some careful coaxing is beginning to do the trick. We are making progress on his general recovery but, of course, should he have to go back to surgery, we will go back a few squares here as well.

We are still definately in need of all those prayers and positive thoughts as there is a lot of uncertainty with William's bowel and its somewhat irratic and lazy behaviour. I do feel optimistic though. When it works, it works well with nice healthy stoma output containing no sugar. His gut is absorbing and moving nicely when it gets the chance. I am pretty sure this is all surgical complications but will feel a little nervous about things until it all gets working consistently. In the meantime, I am gettin good at spotting signs of 'acidosis' when William's blood becomes too acidic, usually following big losses through the jej tube as there is a lot of sodium bicarb lost there. The nurses are getting more than happy to ask the docs to request a blood gas when I tell them I think he is going that way. He is about to have a bicarb infusion now as I detected that tell tale breathing pattern. At least he is chirpy though and chatting to nurses rather than telling them to go away. William is getting there. We just need to negotiate our way around that darn snake so his bowel can catch up with him.


meme said...

Hi there,
Thinking positive thoughts to you.Prayers and best wishes from Maria

suzie said...

Sarah you are amazing!

Prayers continuing here for that bowel to get its act together and for the dice to roll a 20 to by-pass that darned snake.


Rebecca said...

Sending you lots of hugs, and I'll be praying even harder for William. I'm glad he's making progress in his general recovery though, what a trooper he is!

Really hope you can get past that nemesis snake very very soon.

Big hugs,

Becky xxx

sue said...

Poor William, we've got to get you past that peskey snake! As always thinking of you and missing your company.
Went to St Giles today to watch Joseph and went to visit your class 1, everybody sent thier love.
Keep happy love suexxx

Anonymous said...

Sending you all lots of hugs, hope that you get past that snake very very soon.

Best wishes to you all,
Love Emma x

Jessica said...

Wishing you a positive and peaceful weekend, from Jessica

Sarah's Mum said...

William had more surgery today. sarah will fill in the details but all is well.
Hugs for Wills when he is awake and hugs to you sarah from us all.
Mum, Dad, Ellie and Hope xxxxx