28/6/18 – Day 197
28 weeks old, 13 corrected.
Apologies for the lack of update, this is now probably going to be a huge update so I’ll split it into two I think. Recovery has been much tougher than we imagined and as usual nothing can just be straightforward and go well for Arlo! He was great for the first couple of days post op but then it all went a bit wrong and he’s now on antibiotics for a wound infection. The site where the stoma was has actually opened up 😷
The first few days after the surgery everything was going well. His gut seemed to be taking a while to ‘wake up’ after surgery but that’s fairly normal. Apparently it’s called ‘paralytic ilius’ and happens after any sort of abdominal surgery, even C sections! This means his stomach bile can’t go down and out so he had an ng tube which had a bag attached to ‘free drain’ and collect all the horrible green stuff that comes up and it’s also aspirated every few hours.
Thursday his aspirates from his ng tube had started to reduce and go clear which coupled with the small amount of dirty nappies he was having was a really good sign and we hoped he be able to start feeds soon. Then Thursday night his belly became badly distended, his aspirates went dark green again, the amount shot up and he was pretty much inconsolable for next 48 hours. I’ve seen him have a lot of unpleasant interventions over the last 6 months but this was easily the most distressed I’ve ever seen him. Intermittently writhing around in agony, bright red, sweating, shaking and screaming his head off. It was awful. He’d only settle with pain relief and being rocked in my arms. Sammy had had to go home to be with the other boys so we were alone for all of this and if it hadn’t been for another parent bringing me food I don’t think I’d have even eaten. Every time I put him down he went crazy.
I was really worried by Saturday night (I know I’m always worried 😂 but you know I’m really worried when I stop posting updates and go to ground). I’d already been on edge because of the complications he had after his first surgery and it was starting to feel a bit too familiar. The only positives were that he was pooing (green water, nice) so we hoped that meant he wasn’t blocked and his obs were all perfect. Then his temperature started to creep up…
One of the Surgeons came to review him around 1am Sunday morning and as soon as he took the dressing off the wound it was obvious what the problem was. I’ll spare you the details (and the photos) but it did not look good 😷 So he started iv antibiotics Sunday and he’s now having his dressing changed daily, wound cleaned, covered in honey and redressed.
By Monday morning he was like a different baby! Smiling away at everyone and very obviously ready for some food! Unfortunately his aspirates were still large and green though so no chance of any milk. That’s when one of the nurses suggested they could spigot the ng tube and see what happened. So basically take the bag off and see if that encouraged the green bile to go down rather than draining out. If it didn’t work we’d know because he’d likely start vomiting it up instead and if it did work, he could finally try some milk…
This photo is from Monday morning. He was so much happier after 24 hours of antibiotics! 😍