Two more nights of feeds and we seem to be finding our stride. Tube clogs are still an issue but we successfully went the entire night last night without beeping. The clogs tend to happen in the last hour of his feed, so while not ideal, he still gets 90% of the feeds so we are calling it a passing grade.

At physical therapy yesterday the PT said he might be the strongest/fastest TPIAT recovery patient she has ever had. She couldn’t get over his independence and abilities as well as his HR recovery after doing 10 mins on the stationary bike while giving an exposition of his friends. I could tell it made him proud and it also proved his dedication and hard work are paying off!

Our endocrinology appointment went well. The team is very pleased with our abilities to help manage his levels. We still go through bouts of hypoglycemia but are aware of the signs and can correct it quickly. He doesn’t have many highs and aside from the first night, I’m not making corrections except for food intake. Lots of wins.

Now the not so perfect stuff: his continuous glucose monitor (cgm) fell out last night at bedtime. It had been bothering him for a couple hours. It was giving inaccurate readings and generally bothering him so while I’m bummed it still had 7 days of life left in it, that might have been a blessing in disguise. We put it on his other leg and he said it felt better there. I also ordered wipes to aid in the sticking of the tape and overlays with extra adhesive because the more active he’s getting, the more likely it is to happen. Lastly and most disappointing, he threw up last night. A lot. Probably all the food he had eaten in the past 24 hours. Hopefully this is just normal healing, but at his GI appointment today we will probably request an x-ray to make sure he doesn’t have a blockage. For some people it takes months for their GI system to harmonize after this surgery so while it’s a common problem, I’d prefer us not to have it. He felt so defeated but we just keep reminding him he’s still making progress. We all just want to see the feeding tube out. Patience. He’s doing awesome.