23 February

I went into the unit in the morning and had some blood taken to give to Max. Again, it was difficult to get a good vein (from me) – Julie (the NP) persisted, and did very well. I always feel really bad at how hard they try to get blood out of me. I know that there are always issues with blood donors, so using me instead of relying on blood bank stocks is better. I’m not sure how many more we’ll have to do, but each time it’s getting more difficult.
As I arrived today, I was pleased to see Max on low flow oxygen – and absolutely stunned to see that he hadn’t been on CPAP at all since we left him the previous night – that’s 15 hours! He’d only just had a small braddy incident, and June (nurse) was just considering putting the CPAP back on (which we did about ½ hour later). So amazing. I think it tired him out a bit, though, and he promptly fell asleep.
We both went back in the afternoon to talk to the surgeon about Monday’s operation. He was the same person who did the original bowel surgery, and has been in and out a few times to catch up on Max’s progress since. Very nice guy, but pulls no punches. He actually made us feel quite good about the surgery itself, but we’re still a bit apprehensive about the post-operative/recovery process. Max will have to stay on the ventilator (intubated) until the bowel is fully working. Apparently if he was to go off the ventilator too early, the CPAP produces extra abdominal pressure (they swallow a lot of air) which could negatively affect the bowel and create big problems.
Also, he explained the bowel re-sectioning process – we weren’t aware that the little bits of bowel which are currently protruding through his abdomen (the stoma) will actually be cut away, and fresh ‘ends’ made, which are then put together. So Max'll lose another few centimetres of the intestine. There are a couple of things which could go wrong, but Kirby (surgeon) seemed quite confident that the procedure would go well – and there’s backup plans if it doesn’t.
One of the main reasons, from his point of view, to do the surgery now rather than wait until Max is bigger and breathing better, is the presence of the hernia. He couldn’t do hernia surgery with a stoma – so if the hernia became problematic, there could be some big issues and problems. So, he wants to get the bowel working, then later on look at the hernia procedure.
So, Max got more blood this afternoon, plus his normal medications. He’s also up to 8ml per hour of Elecare (formula), plus 3ml PN and 1ml lipids. This means he’s getting a bit more in total – which correlates with his weight gain.