Austin had a good Sunday and Sunday night! He was scheduled to have his bowel follow through study on Friday and they got it moved to Monday morning. So, Austin and I walked down to radiology, completed the study (they gave him contrast in his g-tube), waited 30 minutes and then took x-rays). Dr. Aru (rounding for MNGI) shared this morning there is no narrowing at the site of the ulcer so all looked good!
Then Monday afternoon, Austin's stools returned to bright yellow (I like to call it highlighter yellow) and was the same as Saturday when he was dumping. Unfortunately, the contrast of the study caused a set back. We turned off his feeds for 3 hours (gut rest) and restarted him back 20mL/hr of half pedialyte and 1/2 formula. After the gut rest, he didn't have another stool until overnight. It was still bright yellow. Bummer.
When Dr. Aru rounded this morning we made some adjustments to the plan. Austin is always supported by IV fluid with dextrose during these times when his gut is not absorbing. His feeding rate and his IV rate added together always equal 70mL, which is his normal rate at home. Dr. Aru explained there's no textbook that has answers for us right now. Austin has to tell us. Today we had to go back on his rate 2 more times, but then early this afternoon, we were able to make a couple increases. It's going to be a slow and deliberate process as we let Austin's body recover from this nasty stomach bug!
As for his glucose (blood sugars), they've also been an issue since Friday. We have a glucose meter now for when Austin is sick, dehydrated and/or has a few loose stools. The rounding doctor (I actually forget her name) had a conversation with Dr. Tridgell, Austin's endocrinologist, and she was able to share that Austin currently has no need for growth hormone or cortisol support. All his labs are normal and he's growing. They will continue to follow him and if his growth slows, we may have to reevaluate. As for his recent low sugars, I'm going to do my best to keep it simple and make sense. When we (you or I) have situations such as fasting or the stomach bug, our liver uses stores of glucose to cover for the time when we are unable to eat. Due to Austin's malabsorption, he just doesn't have enough glucose in his stores. So when he gets the stomach bug, his blood sugar drops because he's not eating AND he doesn't have stores to use as a backup. This is why we are seeing his glucose drop during times of fasting or illness.
HOME? We honestly don't know. Dr. Aru said this morning he needs to be tolerating 70% of his normal feeds. We are so grateful for the doctors, nurses and staff at Children's. Being inpatient is no fun at all, especially during COVID...I couldn't even find a latte this morning because everything is still closed on campus! Brian and I are in the every other night routine for now and I'm grateful I can finish out the school year the best I'm able. Just the icing on the cake for an already not normal school year!
Max is having a hard time. He's worried about Austin. We weren't home for house showings and then this happened and so he's been very shuffled and out of routine. Tonight Max and I went and walked through the new house and stopped at the Carver Creamery for some ice cream! We even threw some rocks in the creek! It was a beautiful evening!
Sorry for the length, I will try to post more often so these aren't as long! As always, thank you for all your thoughts and prayers. We are so appreciative and we feel your support, love and hugs!
Stay well,
Tara (Brian, Max and Austin too!)
Comments
Post a Comment