Eroica

After a pretty scary few hours, the boy had a good night. But today he is exhausted from the effort of trying to keep his lungs clear. We are likewise knackered.

Having re-read last night's post, I was tempted to delete it. But that's how it was, so it stays.

We had spent the whole day in a state of high anxiety. Anxious because he was so obviously unwell and needing constant attention to maintain his oxygen levels, even with lots of oxygen support (4l+). Anxious because there was no decision from or sight of the anaesthetists about whether they would give him the general anaesthetic necessary for the brain scan. One finally came and saw him mid-afternoon only to decide he could not decide. It was to go to a higher authority, whom we never saw. By then we were very uncertain it was safe for him to have any treatment that could further depress his ability to clear his lungs. But they decided to go ahead and we nervously acquiesed.

When the boy came back from his brain scan he was very pale, cool to the touch but perkier than he had been all day. He even did a bit of drawing using his wrong hand and looking at a book for the first time. The boy likes to confound expectations.

As it was late, we decided he needed to be settled to sleep. As this was less likely to happen with the wife around she went off to get something to eat. The boy was incandescent with rage. I told him Mummy had gone to sleep. He told me no. She needed to be awake. He then refused to have anything to do with me. When he had finished sulking, he did engage but only to ask for a neb. But to show he was still cross, refused to hold my hand or to close his eyes.

Over the next hour or so his colour returned. Then a pleasant pinkness turned to a flush and then angry redness. And his heart rate climbed to levels that at home would have him hospitalised. It was touch and go for a couple of hours but he then stabilised and settled to sleep. He then slept all night. I had a less good night. Bad dreams including dreaming that the alarm had gone off and I had put him in danger from oversleeping.

Saturday, he had a relatively perky morning. Sat up and played with magnetic book and pointed to items in a storybook. This was not only good to see but also good for his chest infection as it dislodged the fluid in his lungs, as did a later visit by the physio. But, for us, meant another exhausting morning furiously suctioning. The almost constant coughing wore him out by lunchtime. And mid-afternoon he finally fell asleep needing decreasingly less and less oxygen. He still needs some but a trickle compared to earlier in the day.

When we woke him up it was a re-run of the morning. Copious secretions. Catheter after catheter. This infection is a wet not a gloopy one. This went on for a more than two hours. At the end of which we were all shattered. He had another visit from the physio, which helped again. Tonight, I've left the wife to get him to sleep, which shouldn't take long in his current worn out state.

Had a visit from the surgeon in the evening. She says that his scan looks good. There is something on the scan but she thinks it may be scarring from the operation last month. We have to hope so. We will have to wait for his next three month scan to know for sure. But so far so good. For now he is stable and for that we are grateful.