Monday, December 01, 2008

Snakes and Ladders

I still have to go back and tell our story from leaving Chelsea to travel to Birmingham. I haven't forgotton and it will appear. However, today I am finishing (and yest I will finish!) that article that was due on Friday and that I got extended to today. 'Wills is settling so I will easily get it done in the weekend, especially as I am here on my own this weekend' thought I. As Em pointed out in her comment earlier, you can not make such assumptions about transplant recovery. This weekend had hardly a settled hour in it.

So, I must be brief and get on. This week is a new week and I know there will be more ups and downs but I hope we at least travel in something aroaching an upward trachectory. I do need to take things a moment at a time but I am more than expecting we will be here for Christmas so have placed a mini tree on our window sill. I did buy Wills a chocolate Advent calender but it is a bit ambitious to think he will be able to enjoy it for a few weeks so I bought him one with little pockets today. Each one has a tree decoration or something from a craft activity in it so he can either add to the tree (which currently has only faulty lights that need returning but that Wills insists stay up until I go and do it and one star on it) or we can do the craft activity. In place of the item we remove, William and I will write a sentence or two about our day. That way, we will have a record of this unique Advent captured ready to remember next Christmas. Today, William wanted to write 'I am sad' to which I added that this was because of his tummy ache from the second op.

They now think that his bowel was kinked and the laparotomy unkinked it. There were also a few minor adhesions. He seems a lot better today, despite the pain from another cut right across his existing scar. He has been very sore but his colour is better. His stoma has not really got going following the surgery and we will all be more relieved when it does. Until that happens, William remains off feed and on 24 hour TPN. At least this should just be temporary. It would have been a fantastic moment when he came off TPN if all had gone well. It will be even more so now. The surgeon said today that, as far as recovery and feeding goes, we are back to the start, the same place as we were on transplant day. They will be taking things a bit slower now but we should get there eventually.

I no longer think of transplant recovery as a rollercoaster. Rollercoasters are fun and exilirating (although I am terrified!) and you know where you will end off and that it will stop. I think of it now as a giant game of Snakes and Ladders. It is unpredictable. You never know if today will see you climbing a ladder with better progress or see you sliding back down that big snake that takes you from one of the squares close to home right back to the start again. You may get to the end with just a few short snakes and ladders, that would be the best you could get. Or, you could hit long snakes and ladders the whole way through. This has been our journey through the first 10 days. I hope we avoid the dramatic ups and downs from now on in.


Becky said...

Thought I'd check for an update before I went to bed. I'm sorry to hear that he's sad today, but I'm hoping for more ladders than snakes for all of you. Thinking of you, with love, Becky Paulinyi.

Sue Byrne said...

Don't like William to be sad, lets hope it's up ladders all the way from now on! Can't wait to see you,lots of love Sue xx

craftyclaire said...

You are both coping so well, it has been so much for you in such a short space of time. I doubt that many of us would cope as well as Wills has with that much surgery so quickly. I know it is hard to see how far you have come when you see how far there is still to go but I am in awe of how well you are doing.
May it be all laders (or at least normal squares) from now on. You deserve an easy time of it now, so heres praying that is what you get.
Love, Claire McCaryney.

Anonymous said...

Hi Sarah,

Still thinking of you and Wills - I love the pictures of him!! Hope that you can climb some more ladders from now on! When you have a moment hun - please copy and paste your blog over to Fetch, a lot of people would love to know how Wills is doing.

Yaz x