Max - Day 67

 

Max update,

day 67:

Y’all, prayers are powerful. Max had a great day. He only had a vagal/bradycardia episode once, right before I left only because I accidentally gagged him with his pacifier

(he has such a sensitive gag reflex), but there was no vomiting, thankfully. I was able to catch rounds this morning and we discussed a few different things we could do in the next few days to help him recover from all the emesis/vagal-ing/bradycardia episodes. We opened his gtube to gravity in a diaper (basically, letting the g-tube drain any bile or mucus to a diaper attached to the end of it) and immediately when we opened it he relaxed and his face softened, and after that he was the happiest little guy and had three long, peaceful naps, which was SO needed. And we’re keeping everything in his room really quiet, keeping him swaddled and “organized” as the occupational therapist puts it. Low stimulation for now….keeping him calm in an effort for him to recover.

I’ll be meeting with the pediatric surgery team and GI soon to discuss the nissen/fundo plication procedure and schedule it, just to make sure we have it in the books in case we do do it. We want to avoid it though because we just don’t want to have to put him through yet another major surgery. So we wait and we’ll see how he does in the following days.

But we’ll take today and put it in the bank. Those smiles and coo’s just fed my aching mama heart to the brim. To see him feeling so much better was just the best.

Thank you for your prayers! Keep them coming, please. #mightymax

#maximilianrobertmancini #stmaximiliankolbe #hlhs #hypoplasticleftheartsyndrome #halfahearttwicethefight