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.