Sunday, 21 October 2012

Wishing ...

Adam has been both slightly improved today, and just the same. His temperature increased during the afternoon, and as I left him settling down to sleep this evening it registered 37.7°. Not very different from the night before - 38.1° and 37.7° are the same, or at least the same pattern, to my mind. His stomach ache makes him uncomfortable and he cannot eat without making it worse. Consequently he's eaten very little once again today. It's not good.

In himself he has been more alert and a bit more active. He came home and joined in games with the rest of us; he tried to yesterday as well when we had family visitors but it was a real struggle then. Today he was able to participate more easily and more fully.

We have ditched oramorph. Adam had such a bad time with IV morphine in Germany we can't exclude it as being a contributory factor. I know he's on a lot lower dose orally now, but we started to give him it for the bone and joint pain, he eats the best he has for a week, and suddenly he has stomach pains and general malaise. We need to see the pain consultant at the Royal Marsden if we want Adam to be prescribed an alternative.

We agreed with the doctors yesterday that we would stop two of the antibiotics and just retain the third that was started on Wednesday, and is given as a once-a-day infusion.

If the fever returns they will start anti-fungal medications, chest x-rays and CT scans. But what Adam is experiencing now in terms of fever could so easily be neuroblastoma. The stomach ache? Who knows. It only started on Friday night, pretty much as Adam had gotten over the worst of all the other various aches and pains he's had. If it wasn't for that we'd have been discussing whether they'd allow us to take Adam to America with paracetamol to ensure his temperature remained fully under control.

As it is, we just need our little boy to catch a break, instead of lurching from one thing to another.

All Adam wants to do is come home to sleep in his own bed.

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