Thursday, December 11, 2008

Baby Steps Forward

Wills has had another good day. He has now started on 5mls per hour diorylyte. This is a tiny baby step forward but it is a step forward! We just wait and see if we can keep on going forward now and miss that snake that kept pulling us back to the start. Things are looking good so far. We gave his new bowel a good while to rest and recover from Friday's surgery and that was a good call. It seemed that the time was what it needed. We still have a way to go though so I am not going to think too far ahead.

He is still sruggling with acidosis and bicarb deficiency, dropping as low as -16 (some readers may understand that, I don't!) I do know that it should be 0 an - numbers are too acidic and + too alkaline so -16 is far less than ideal. We are not really sure why this keeps happening and just keep on correcting it with sodium bicarb infusions. The feeling is that he was just so depleted earlier on that the correction is not lasting. We will get there with this as well. A transplant is such a huge thing for a body to go through and William is really recovering very well. The team also still think he has some infection somewhere because of his liver enzymes. To me, they are not much different to before transplant. However, they did normalise for a while so, given that he had incessant infections prior to transplant and they are in similar ranges now, perhaps he does have a little bug somewhere. He is not symptomatic but his antibiotics have been changed in case.

William has scored a small triumph. He no longer has to have nystatin! He was so cross and upset about it that he held it in his mouth, refusing to swallow or open his mouth, even to talk, for a good hour at least each time. As he had it four times a day this was a bit crazy really. He now has a gel twice a day instead. He hates that too but will endure it with the threat of that or nystatin. He is certainly getting his personality back.

Paul has now gone home again. It has been nice to have the company. I feel morelonely and isolated up here than ever now he has gone. I will feel better after a good sleep. William was up at 5 this morning! I have a meeting with our main consultant and liason nurse tomorrow for a chat on how things are going and what he expects in terms of William's subsequent recovery. These meetings usually happen weekly but it has been too busy. I am not too bothered as the news would not have been as easy to hear until now. At least we should get something encouraging from our chat now. It is in these meetings that the 'H' word and plans towards it will be discussed, eventually! We have a way to go yet but as long as we keep taking these little steps in the right direction I will be happy.


Rebecca said...

Huge huge YAY to William being able to tolerate the 5 mls!!!

Really hope that his blood calms down and stops with the acidosis and that the fixes will last longer.

Big big hugs to you for feeling lonely! It must be so tough being there on your own for a prolonged period. Hope you get some more visitors very soon, and it's not long til you'll all be together for Christmas.


Becky, Seren & Dylan xxx

Tinypoppet said...

Excellent to read about another rung on the ladder Sarah...

It did amuse me reading about William's triumph - a feisty fighter - exactly the kind of behaviour which you want to see post transplant, even if he is fighting the docs!

Thinking of you lots and lots....I know you're very far away but we're all with you in spirit. On the end of the phone anytime for a chat.

love Em xx

CCHS said...

Dear William, Sarah and family,

As you can imagine it's been crazily busy at Chelsea and Westminster Hospital School over this Christmas period!! However, it's just not the same without William here! We're so glad that things are going well, and Sue has been keeping us updated regularly.

We are always thinking of you and sending our love.

William- don't forget...'Get the Glue in the Night'!!!!!

Lucy, Laura, and the School Team.

meme said...

So pleased that you have climbed that same ladder,one step at a time.Thinking of you all,love Maria

Becky said...

So great that you are starting on a ladder, even if it's only baby steps forward.

Love Becky x