SCH PICU day #12

I’m happy to announce that Riley is turning a corner here. It’s certainly a huge relief but at times I still hold my breath and cross my fingers that we stay on this course, especially when I see random desats in his oxygen numbers. It will be a slow road to recovery, and I’m sure we won’t be able to take him home anytime soon. I’ll be surprised if we make it home by NEXT weekend. I can only hope, especially since his Nana, Papa and Uncle Brad are coming up then to visit and I’m sure Riley would love to be home with them!

Riley’s tummy isn’t as distended as it was (still very big compared to his normal skinny waist though), so he’s been able to tolerate his normal feeds through his g-tube again. He spent about 5 days on the TPN version of his keto diet (IV form), and that was probably maxed out anyway as those fats going directly into his veins started to have an effect on his pancreas, which isn’t good. So that’s done and gone and his pancreas is recouping nicely from what I understand. He’s getting the minimal amount of fluids as possible (but with max amount of his feed), since he’s still very puffy. Thankfully he’s started peeing well on his own, the catheter came out a few days ago, which I’m sure he appreciates! He’s kidneys have recouped enough that we have been able to give him a few doses of LASIK (med to help you pee out fluids) a day, and that has started working well. I think the biggest thing that will help him start moving all that fluid around will be when I can get him out of bed! Needs to come off the ventilator first though, but the day it does, he will be in my lap all day and I won’t be giving him up! This is the longest I’ve gone without holding him, and still have at least several days, if not another week, to go.

Respiratory wise he’s slowly starting to improve, but like I said, long road ahead. Just like the rest of his body being weak muscle wise, so are his lungs, which means they’re gonna take a while to get back to normal. We are slowly making changes in turning down some pressure support on the ventilator. Maybe in a few days he will be strong enough to try dropping it back down to the CPAP mode. They’re actually going to turn one of them back up a little bit today to give his lungs a little bit of a rest, as they’ve been doing more on their own the past day or two. Biggest reason for this is, that he gets to go on a little field trip today.

Neurologically he’s been very slow to come around after going off of his sedative medications that he had been on when we first got here. He’s been off of them about a week now, and he’s just barely starting to open his eyes a little bit more and react to things. For being this sick, I’m not overly surprised, but agree with the docs that since Riley is such a little wild card, that we want to make sure all basis are covered. So even though he’s had at CT scan (portable to his room) that doesn’t look much different than his previous MRIs, and a seizure free 24-hour EEG, he will be rolling out here in about a half hour (by the time I finish this!) to get an updated MRI. His last one was in August, so I know Vlcek was going to be wanting a more current one soon anyway. So I made sure the PICU team coordinated with him to have all ducks in a row, and just get the one done now.

Think that’s about it for now. Continue to attempt to relax and recoup. It will definitely be a process, but at least we seem to be going in the right direction. Was pretty nice to have his EEG hat, catheter and ART line taken out/off all at once the other day. Let’s keep that trend so I can get him out of bed! His PICC line will probably be coming out sometime early next week once IV meds settle down some (just leave the one IV), and hopefully the ventilator will soon follow. He’s gonna get a new bed when he goes for his MRI since the scale stopped working on his current one, curious to see how much bigger he is compared to when we came in, and compared to his highest point with all his extra fluids! Good thing I’ve held off on some summer clothes shopping….