Find the river

The boy had a broken night. He is very tired. Still preferring to lie in bed to playing all day. secretions down but loss of swallow function. At least he is still stable.

The wife and my reaction to the news from the brain scan was curiously muted. We didn't discuss it after the neurosurgeon left. And we didn't even discuss it when the boy had gone to sleep. Partly because we are tired from caring for him. Partly because his chest infection gives us more immediate things to worry about. And partly because it may be the news we've always dreamt of but never thought we'd hear. But also because it's not the clear-cut, black and white news that would allow us to be properly happy. It doesn't feel as if the sword of Damocles has been removed quite yet. It would be awful to allow ourselves to get our hopes up only to have them dashed. His prospects may have improved but we are still in the waiting game for the next MRI.

We are very grateful for the treatment the boy has received. The neurosurgeon is dedicated to a point that, if the boy wasn't benefitting from it, I'd be tempted to call unhealthy. She came in on what must have been her weekend off to review his scan and give us the news, rather than waiting for Monday. The nursing staff are excellent and dedicated (even the one that managed to upset us yesterday). And goodness knows what the NHS would do without Antipodean nurses.

It was very noisy in the bay last night. The two babies in there were unsettled. One or other was crying for most of the night. As a result, the boy only seems to have slept for short periods. He didn't lie in this morning. He looks very weary. He did want to read books for a while. But then, as his coughing increased, just wanted to lie quietly. We are not used to this. He has been cheerful and playful through most of his other illnesses. He eventually drifted off to sleep mid-morning, only to wake after 40 minutes to have another coughing session and be sick.

The boy sleeps with little panda. The green tube attached to his trachy is for oxygen. The bay is hot, so there's no point in him wearing pyjamas.

This afternoon we had a visit from the physio. She said that the volume and looseness of the secretions were excessive for a chest infection. We tried out our theory that he is having problems controlling his saliva and this is causing it. We had tried to say this yesterday to a number of the medical staff but as there was no pooling evident in his mouth they rather dismissed it. She took it back to the ward doctor and they are now taking it seriously. They do often say "you know him best" but don't always follow through.

We inflated his cuff to near maximum and, as if by magic, the secretions stopped. Good news for his chest. But bad news otherwise. With nowhere to go, the saliva is pouring out of his trachy stoma (the hole in his neck that the trachy goes in) and his nose. His mouth is firmly clamped shut and we cannot get him to open it. We have therefore spent the time mopping his nose as saliva streams out and mopped his chest as a little river runs down to his belly button. Nice.

We cannot be certain if this is a temporary feature related to the slackness in his face, temporary swelling in his brain or something permanent as a result of the surgery. This is unlikely to become clear for some time, perhaps months. In the meantime he will not be able to say anything and his infection risk will increase. If long term this could have very serious consequences for permanent weakening of his lungs. He has a patch to reduce his saliva but this will take a little while to work.

He was happy to receive an afternoon visit from auntie and the pandas. He let auntie make them tea to share. But he was too tired to really play with them or auntie. When he slept, auntie and the pandas left. And the wife and I took advantage of a kind offer from a nurse to watch the boy and had a rare hour together. We talked a bit about the scan but not much. Until we have the next scan there is little to be gained from speculating about the various "what ifs".

This evening the boy received a visit from one of the nurses that looks after him at home. The one he plays (up) with most. He was pleased to see her. She had very kindly brought some food for the wife and me and watched him while we bolted down the food. We eat such rubbish meals when he's in hospital that home-cooked food was a godsend.

It is hard to look at the railway map of scars across the back of his head without some feeling of guilt for what we have put him through. Whatever the logical reasons might be. It is harder to remain logical and positive when we are so tired. We therefore decided that as he was relatively stable and we are both exhausted that one of us would stay with him and the other would go home. Normally, I'd insist it was the wife but I gratefully accepted her offer for it to be me. The cumulative effect of two operations takes its toll on us all.

This time we have seen a range of parental reactions to their children's illness. Most. like us, stay with their children and do their best, however inadequate it feels. But some seem to find it more difficult to manage. They come to visit their child for a few hours like a sick relative and then leave. Others hardly come at all, leaving all the care to one parent. As if they cannot cope with their child not being what they were before diagnosis. In some strange way the wife and I envy their ability to walk away but we realise, in practice, we couldn't.

It is hard to believe that we have been in hospital for five days. It seems oddly timeless and endless.