2/6/17 – Day 171
24 weeks old 🎉 9 weeks corrected 🙂
Current weight – 4.080kg/8lb15oz!
So to update the last few days. We’re on day 5 back in BCH, day 10 since this all started. Still no real idea of what’s caused his stoma losses to go up so much, possibly a bug thats just taking longer to clear than it would a baby without an ileostomy, but stool samples have both been negative so far but doesn’t necessarily mean it wasn’t a bug…
He was in CAU at Telford Wednesday, Thursday & Friday last week because of his high output and he came home Friday with a plan to have half dioralyte, half milk for 24 hours and then review. Saturday we restarted full milk feeds but his output was still too high. Sunday output actually came down a bit and was within his limit but Sunday he was well over 200ml by teatime. It was pouring out like water…
With it being Bank Holiday (typical Arlo!) the person Telford had been taking advice from at BCH wasn’t available (it’s tricky because for his stoma/nutrition he’s under BCH rather than Telford, so it’s a sort of joint thing which works well usually but stuff like bank holidays throw a bit of a spanner in the works!) and I was a bit worried about waiting until the morning so I rang the neonatal surgical ward in the end, just for reassurance, and they were great. Said he would need a surgical review by the sounds of it and advised taking him to BCH via A&E, as that’d be the fastest route to a surgeon. So that’s what we did.
A&E at BCH were brilliant! As soon as they knew he was a 25 weeker we were taken somewhere separate to wait (So. Many. Coughing. Sneezing. Children 😭). Then 2 Drs who had looked after him during his first 6 weeks at New Cross came to say hello because they’d seen his name and when we got taken through to a cubicle it turned out one of them was looking after him which was nice. It was funny actually, I brought our copy of all of his discharge notes from the 4 hospitals he’s been in (much easier than trying to explain it all!) and it turned out he’d written the New Cross ones! 😁
He was then admitted to the paediatric admissions unit at BCH and has had to have replacement fluids through a drip. The reason for this is that baby’s with a stoma can dehydrate very very quickly and it can make them extremely unwell so anything over his ‘allowed’ output has to be replaced. He’s also had the recipe for his milk changed. He was having a concentrated feed to get more calories in but it can be a bit harsh on the tummy so he’s on the normal recipe for now. We’ll go back to concentrated in a few days hopefully.
Yesterday his output seemed quite a bit better. He had 137ml. His limit is 100ml beforehe needs replacement fluids but it does seem to be slowing down… I’m still not entirely convinced it’s a bug to be honest. I’ve got that niggly feeling that we’re missing something… I remember early on after his surgery reading a list of possible complications. One of them was stoma stenosis. The symptoms include diarrhoea and excessive wind, both of which he’s has/had. Especially the wind, we’ve been having to let the air out of the bag it’s been so full at times! I guess those are also gastroenteritis symptoms too though so… I don’t know… it’s very unlikely but this is Arlo. He laughs in the face of ‘uncommon side effects’.
The most baffling part of all this is how well he’s been throughout! No signs of illness at all (output aside!) and being a bit sleepier. No temp or excessive crying or anything like that though. His many blood tests have all been good, apart from slightly raised potassium. He was pretty annoyed about the cannula going in and made sure everyone knew about it but other than that he’s been great, grinning away and charming everyone he’s met. Hopefully today’s output will just go back to normal and that’ll be that. Anythings a possibility I guess…
Look at that smile, he’s just perfect 💛