30 January

Day 70 – Max still on CPAP!
After a very odd day for me yesterday, today was very nice indeed.
Yesterday I only went in for about 90 minutes in the morning. I felt very uncertain and insecure. I think this is mainly due to the changes in the way Max is being cared for now. Up till now, he’s been on 1-to-1 care, where there has been one nurse solely looking after him. Now he is “doubled”, where one nurse cares for Max and one other child at the same time. While I know that this is a good thing, as it means they see Max as being really much more stable, for me it’s a big adjustment. I look at the monitors, graphs, lines and numbers and worry because there’s no-one standing next to him.
I know this is a prelude to the change we’ll have when going to Level 2 (hopefully), but, right now, it’s quite hard to deal with.
Yesterday his O2 requirements were 27-35%. He desated occasionally and seemed to have a braddy (though we were assured it wasn’t a problem, and possibly wasn’t even a braddy, just hyper-sensitive monitoring, it still shakes us a lot). Today he was in 21-27% with only once (while we were there) going to 30% when he did a big desat dive.

I also got to hold him – and he had his CPAP completely off the whole time! I held a small oxygen tube to flow near his face, just for support, but he did very well throughout. He was weighed and measured (1460g & 38cm), then Sally (nurse) wrapped him up for me to hold.
It was so much easier than ever before, despite the O2 tube. He opened eyes for ages, looking at me and all the goings-on. Later he seemed to sleep. All up, he was off CPAP for about 45 minutes.
Big problems with his stoma bag. For the last day or so it’s been getting a leak, no matter how many times they change it. It’s important for many reasons, one of which is that they need to know how much (volume) loss is coming out of the stoma. This then given an indication of how well Max is digesting his oral feeds.
The long term use of PN is negatively affecting his liver. The only way to stop this is to stop using PN. The only way to really stop using PN is to get his oral feeds to provide sufficient nutrition. And, the only way for this to happen is to have a fully functioning bowel.
I spoke with Dr Michael and also with Dr Scott about all this and the upshot was that Dr Scott spoke with Dr Kirby (the surgeon) and they’ve decided to schedule the bowel surgery for around 2 weeks from now (certainly no more than 4 weeks). Actually, we’re very keen to get it done. Max will have to be reintubated for the surgery, but if he can stay on CPAP until then it will hopefully be relatively easy to get him extubated again afterwards. And the hernia surgery would be done a few weeks later, when he’s stable again.
Big weeks ahead.