A better life

It went better than I expected. So said the surgeon. But we won't know for sure until he has his brain scan. Side effects unclear but pronounced weakness in right side of his face. We are just so relieved that he has come through this relatively intact to care about anything else at the moment.

It's always difficult to know when to go back to the hospital when the boy is having an operation or other procedure. You get a guide from the nurses but understandably its difficult to be precise. If you come back too early and then have to wait on the ward this adds to the tension. You sit there on uncomfortable chairs drinking too much coffee and jumping every time the ward phone rings in case it's a call from the recovery room. But you don't want to get back after they've gone to recovery to collect him as you feel a neglectful parent. The nurses always make soothing noises but you feel a heel, as if a call from Social Services is just around the corner.

Anyhow, after five hours of eating and desultory shopping we agreed to go back to the hospital. Mostly on my insistence. Its usually me that cracks and wants to go back. It's not like there's you can go in theatre and stand there advising the surgeon "A little bit to the left with the scalpel please". But it makes me feel psychologically better. But on this occasion I got it right. We had barely hung up our coats when the call came from recovery that he was ready.

Recovery is an odd place. All or nothing a nurse said. It can be a place of calm where they monitor patients after theatre. And you can hold his hand and give thanks that he's come through it ok. And the nurses glide around efficiently, constantly checking the various lines and monitors. Or it can be like walking in on a symphony of monitor alarms accompanying a child soloist giving it his all. Today was big production opera with international standard soloist and full chorus. Quite Wagnerian. In other words, noisy organised chaos.

We were shocked to be met by the surgeon. As the operation was on the shorter side, we feared she hadn't been able to do what she wanted and get all the tumour. But since she was prepared to discuss it in the doorway we figured it wasn't truely disastrous news. She said that it had gone better than she expected. She thought that she may have got all the tumour. But the scan tomorrow or Friday will make things clearer. She didn't cut any nerves that she knew about. But she did have to "tug really quite hard on one of the facial nerves. It stretched but didn't snap" I was left decidedly queasy at what was, for me, too much information. She said that the stretching had caused some asymmetry to the right side of his face. Might be permanent, might not. Would take three to six months to be clear.

She cheerfully announced that he was not in any pain. He had told her so himself. We were stunned. Last time he had barely been conscious for the best part of twenty four hours. But he was indeed awake. Wanted Mummy and to hold her hand. Wanted the bed raised. Wanted to have a nebuliser. Was tetchy and bossy for about an hour. But when we got him back to the ward he drifted off to sleep. He does have a pronounced slackness to the right side of his face. A bit like having had an injection in the jaw for dental work. He is dribbling a bit from the droop in his mouth. But he can move arms and legs, though not clear how well or what effect there has been on his already precarious balance. But given what could have happened so far, so good. But the next fourty eight hours are critical.

The thing about an operation is that the initial situation can be misleading and things can change quite drastically over the first fourty eight hours. This happened after his first operation and he ended up in intensive care on a ventilator. We were given a sobering reminder of this on the way back to the hospital today. We met a parent of a child who had been admitted just after the boy's operation three weeks ago. Like us when we were first told of the tumour they were in shock. Their child went for surgery the day we left to go home. It had seemed to go ok with the child sitting up and talking after the operation. But then things had deteriorated. She had developed fluid on the lungs, had to go to intensive care for ventiltion. Had seemed to get a bit better. Had bleeding in the brain and a stroke. Had airway problems. Was still in intensive care after over two weeks and might have to have a trachy fitted. And not all the tumour's out. Let's hope the boy fares better than that.

Mrs Ctel and I are still in shock from the operation. Such acute tension. Worrying about how we would deal with a range of downsides. It will take a while to take in what we know about how it went and what his side effects really are. But as of now we are better off than we thought we'd be. And for that we give thanks.