Eat Me Drink Me Love Me Kill Me

The boy's gastro feeding tube is over two years old - they are only supposed to last for 18 months. He was supposed to go for an operation to have it replaced today.

The hospital were very keen that we did not cancel. We had been concerned that his chest infection would make it a risk he did not need. Despite the need to the operation we decided it was best to cancel, even though he seemed much better yesterday.

Lucky we did. He did not have a good night and ended up back on oxygen overnight, with a temperature. Hope the gastro will last for two weeks until the next slot for the operation is available. And hope he will be well enough by then.

Walk unafraid

Just to add to the fun, the boy's got a chest infection. Needed oxygen overnight for the past two nights.

The boy started to get ill on Sunday. Secretions going yellow. And a temperature. Secretions full on custard yesterday. Puts Friday's operation to replace the gastrostomy in doubt.

That's the thing about a seriously ill child. You never know what's going to happen from one day to the next. Forward planning so difficult. Not always time in which to absorb one set of news before the next thing arrives. You just have to keep going whatever.