Infected (7" mix)

A rather mixed day yesterday. The boy is pretty well but prospects for going home seem to have receded somewhat. And he's confined to his room.

The boy is now consistently breathing normally in air when awake (and needing very little oxygen overnight). Is happy and playful but starting to talk to little panda about wanting to go home. He watches far, far too much TV. But what can you do when he's stuck in bed?

There was no sign of the respiratory team coming to give us the results of last week's CT scan. They said they were coming in the morning, then in the afternoon, then after clinic. But they never showed. No explanation. The wife was furious and in the evening and subjected me to a tirade against them. Her main point - with which I agree - is that for us parents it feels they give us little or no attention because we are not on the respiratory ward. Out of sight, out of mind is how it feels. This can seem a major difficulty in the Big National Hospital. If you have one thing wrong - like cancer - then the care is excellent. But when you start to straddle more than one specialism, there is a tendency to a silo mentality which means they don't always work well together. The boy is a classic example of this complex situation.

The boy has had minor temperatures every day for the last few days. They took samples last week. The results came back yesterday. He's got some sort of e.coli gut infection. They are considering how and whether to treat it, since he doesn't appear to be suffering much at present. But in the meantime, he's not allowed out of his room in case he infects any other children. This is hard on him and hard on the wife, trying to keep him amused in a confined space.

Oh, and we restarted chemo (etoposide) yesterday. This is while we wait for the doctors to finish their Easter holidays and decide on options for the boy.