The Sidewinder Sleeps Tonight

Weary few days. Hard to know where to start.

Good things: got home on Wednesday to be told by the boy that two men had come and "old bed gone". He had been too big for his hospital cot for some time. We would have bought him a new bed ourselves but the Community Nurses said he needed a special one. It had finally arrived. It was sweet to see how excited the boy was with it. Happily telling me how big it was and demonstrating the fact by flinging himself from one end to the other, before showing me how to bounce up and down on it.

Less good: the boy has still been having fluctuating temperatures and high heart rate. All controllable by paracetamol or ibuprofen. But worrying nonetheless, since it seems to have been going on for a couple of weeks. And it was time for his rescheduled gastrostomy operation, postponed two weeks ago because he wasn't well.

Usual restriction on his overnight feed and early start. Always tricky as there is such a lot of his stuff that can't be pre-packed. Nevertheless, got to the hospital by 7.30am. The boy was happy enough to have the car journey and to play in the ward playroom for a couple of hours. But then started to get bored and restless. Wanting to go home. Just as we thought he was going to get bumped onto the afternoon list they called him down.

I had wondered how they get the tube out and the new one in but hadn't wanted to ask. The wife did. Unpleasant. The ENT surgeon cheerfully said "it's easy". You unscrew the end. You pull out the jejunostomy tube and chuck it in the bin. Then you feed a guide wire down the tube and wiggle it back out through the mouth. Stick a little balloon on the end of the tube then pull the whole thing out of the mouth. And the new one goes back the same way.

The wife had to go to another hospital for a different appointment about the boy. So, I looked after him following the operation. Inevitably, when he woke up there were innumerable questions on the "where's Mummy?" variant. He was cheerful, despite a small bleed from the trachy. But, understandably was rather hoarse. Then, the "go home" pleading until they were ready to let us go home when it became "no home".

Got the boy home to bed ok. But his temperature went up significantly, as did his breathing and heart rates. And he needed a fair bit of oxygen. Bit dicey for a while. Have to hope we can get him to rest enough to overcome whatever is the matter now without going to hospital. Just so wearying to go from one worry to the next with precious few nice bits inbetween.