All the right friends

More of the same. Short periods when the boy is active and much longer periods when he is not.

After I'd finished last night's post, there was a knock on the door. It was a man who lives nearby (the boy calls him the man on the round and round stairs) who said he knew the boy was having an operation and gave me a present for him. So kind of him. I was quite speechless.

The boy had a reasonable night. He is still having saliva pouring from nose and stoma. And when we deflate the trachy cuff there is a vast reservoir that has to be caught before it goes into his lungs. The effort of coughing it all up makes him sick. All over me, as he was on my lap. The medication to control it is currently not working. It has been increased.

All in all, he is not doing too badly. He hasn't currently had all the dire side effects that we feared. His brain functions seem broadly ok. He has facial weakness, loss of swallow and now loss of blink in his right eye. Both of the latter two are serious if permanent. The swallow will put his lungs/breathing at significant risk. The lack of blinking gives a risk of eye damage, perhaps longer term blindness. This eye had problems previously and the new problems won't help.

Things that remain to be tested are hearing and balance. The loss of hearing in one ear was a high risk of the operation (he already had some hearing loss before the operation). We won't know about his balance for a while yet as he will need to recover strength before we try out sitting up for long periods and then walking.

He has been approved by the doctors as stable enough for a cubicle this morning. This should help his sleeping as it will be quieter. But now we have the problem of ensuring nursing cover for him tonight and going forward. This was eventually resolved late afternoon.

Had another visit from auntie and the pandas. Quite brought a tear to my eye as he spontaneously sat up to greet them with genuine enthusiasm and excitement. Unfortunately it was all a bit much and he was very sick a short while later. He spent the rest of their visit lying down.

After auntie left he agreed to have the TV off, the lights dimmed and to have a nap. Something he would violently object to if he was feeling at all recovered.

He had a quiet afternoon. Got a visit from one of his night nurses, which he was pleased about. The periods in which he is prepared to play are increasing slowly. But he still can't sit up for long without tiring.

As it was one of his night nurses this evening (not the same one that visited earlier), he was prepared for us to leave him quite quickly - before 9pm. With some trepidation the wife and I decided to come home for the first time since the op. I'll be back for 7.30am tomorrow while the wife has a much needed and deserved lie in.