Day 113 part 2

5/4/17 – Day 113 – 16 weeks old, 1 week corrected!

Latest weight: 2.898kg/6lb6oz!

Today we’ve moved room again. We’re now in Bumblebee. Obviously he’s still technically in isolation because of the serratia but as far as I know this means he’s now in special care! Woohoo!

When I last updated I mentioned we were waiting for stool sample results and we got those back Monday. They showed his absorption is slightly better. Still plus 2 fats (was plus 3 before) but any improvement is better than none at all. We then spoke to one of the surgeons and he explained that it won’t be possible for Arlo to go to Telford because he needs to be where the surgical team are really, it’s the best place for him to be, and that’s the most important thing.

We spoke to the dietitian and surgical nurse today and we have a bit of a plan now (subject to change, this is Arlo after all!). In a nutshell, they’re really pleased with his progress. The fact that he’s on full feeds is brilliant, especially considering the position of his stoma. His tube feeds have now gone up to 40mls 2 hourly (plus his 3 breastfeeds a day) and he’s allowed a slightly higher stoma output now (30mls per kilo, per day) so we’ll see how he goes with that.

His liver function is getting better, slowly. As it continues to improve that’ll help with fat absorption and we can then start to add more breastfeeds in. They’d like to now start offering some of the tube feeds with a bottle. I feel a bit wibbly about this because I’ve worked so hard pumping for the last 4 months and my long term goal is to get him exclusively breastfeeding so I’m worried about nipple confusion but it’s highly likely he’ll need his special milk for a while yet and obviously it’d be much better and more comfortable for him if he could have it via a bottle rather than down a tube. I’ll still be feeding him too though and we’ll be doing paced feeding too so that should help.

As things stand right now and please please bear in mind things can (and regularly do!) change at a moments notice, the long term goal is to get his feeds sorted and get him gaining weight, and eventually discharge to the H word that we dare not even say out loud with stoma reversal at a later date! Obviously we’re not talking imminently, he still has a way to go yet, and lots of things could throw a spanner in the works but that’s what we’re aiming for longer term.

We thought he’d have to have his reversal surgery before discharge could be considered, and that might still end up being the case, but for now we’re aiming to go H word first. We’ll see… 🙂

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