Stutter Steps

I didn't post much on his birthday because I wanted to focus on him, and not all the mess going on. I was struggling emotionally and needed to "switch the field" or "reframe my story" or whatever expression resonates with you.

But since this is how I detail his journey, and how I keep track of things, now it's time to do so. 

Spoiler alert in case you don't want to read all of it, he's doing better again and we're making decent strides forward. Maybe even bigger than baby steps. Not sure they're milestones, but bigger than inch-stones. Maybe foot-stones? (Yep, just made up a word. English is a living language after all.)

Sooo, Monday was a good day, really, but Monday evening not so much. By then we'd turned off his nor-epi, the nitric and was on home vent settings. They brought a home vent to the room to change him over to it.  And then he started fevering, again. And his sats dropped, his belly got big, and he started looking bad again.  He was getting 20 ml/hr of his feeding but it wasn't moving anywhere, so we had to stop. By 4 am, he was maxed out on the vent again, couldn't maintain sats, was using rescue sedatives, and was put back on the nitric. Sigh...

Tuesday was a big day in addition to his birthday. We spent time trying to figure out what was going on (again!) and working through things. It had been over a week since he'd had nutrition, although his labs were still very reassuring, so he got a PICC line and is getting IV TPN (nutrition through a vein instead of his stomach). He even managed to spend about 30 minutes sitting up in his wheelchair. 

Cute, whimsical door hiding
interventional radiology where 
they put a PICC line in his arm
ending close to his heart.

Maybe that made the difference. Maybe it was tincture of time. Who knows (and not quite sure if I care) but he's doing better again! He's pooping (a lot! TMI?), his belly is soft, and he's breathing better. We're once again weaning his nitric and hoping to be off it by late tonight/early tomorrow. He's tolerating weaning both his versed and his Precedex and we've started his feeds again, reeeaaaaly slowly. He's getting 5m/hr, just enough to try to wake up his gut.  And he spent about 4 hours yesterday in his wheelchair. Being upright, not lying down all the time, is good for a person in many, many ways. 

Next steps are to finish weaning his nitric, wait a while (24+ hours) to make sure he's good with it, and then switch to a home vent. We need to get off all of his sedatives (without major withdrawals) and hopefully increase his feeds. I'd love to go home on feeds and not TPN, but if that's not happening, we'll go home with the PICC and IV feedings. It can happen, it does happen. I'm hoping it doesn't but I'm also not interested in sitting in the hospital if that's all that's keeping us here.

So there's work that still needs to be done, but we've got a plan. 

Let's hope Aaron agrees... 

"Notice the disappointing things and marvelous things at the same time,

because they dance with one another."

Dr. SunWolf