Tuesday, April 29th

Neuro made their rounds this morning and shared some thoughts on Botox. It’s something they’ll sometimes use to combat tone and help relax tight muscles, but in Dallas’ case, they’re leaning away from it. Apparently, in rare situations, it can spark an autoimmune response — not something we’re keen to roll the dice on. Plus, she’s not terribly tight right now. You can get her loosened up, and she still seems to have full range of motion.  So for now, we’re shelving Botox.

Speech came by and brought a little cold water and a tiny spoon. Dallas had some good swallows with it, though there was a bit of coughing. She even wrapped her lips around the spoon and moved the water around in her mouth — a lot of coordination involved in that – a small win towards progress. We also did some dry spoon practice, just the motions without liquid, to get her more used to the movements. The plan over the next day or two is to practice with the spoon dome more. Simple stuff, but very meaningful.

Rounding team said they’ll be swapping out her NG tube — it’s been 30 days and time for a fresh one. Heather asked about a G-tube, but Dr. Coletti (who I continue to really like) said she wants to give Dallas a little more time on the NG before making that call. That sounded great to me.

Tomorrow will be the last round of PLEX (plasma exchange). After that, they’ll begin administering IVIG and Tocilizumab infusions again. The hope is that the PLEX will have cleared the way for the two infusions to be more effective afterwards.

The team is adjusting her Gabapentin dose a bit, trying to find that sweet spot — helping dial down the potential for getting startled, without making her too drowsy or foggy. Since she’s slowly becoming more awake/alert, it’s a balancing act, like so many things right now.

PT & OT were back in today. Dallas still seems to have strong feelings about them — wasn’t her favorite part of the day yesterday either. Her respirations go up, and her expression says it all. It’s hard to see, but also… it’s something. It’s a response. She’s showing more of herself. There were also small but important moments: some intentional neck movements on her own, a bit more self-initiation in adjusting. They brought in a mirror, so she could see herself, but ran the idea by us first. It can be tough thing to see the first time — tubes, IVs, hospital setting, etc. — but she seemed ok with it.

We had a sweet visit from Troy, Kathy, and Kim, who drove up from Wilmington to see us. We were able to sit outside in the courtyard with them for a bit. The weather was great, and it was good to breathe in some more of that fresh air.

Papa’s in town for a few days and is on night duty tonight. We’ve briefed him on all “the things” we do to keep the unnecessary checks, housekeeping, etc. OUT, so that Dallas can rest. We’re grateful for him being here with us and tagging in. Having support, especially at night so that we can catch up on sleep, is a game changer.

We’ll close today with our eyes on tomorrow’s PLEX — the final one — and with hope in what comes next. IVIG. Tocilizumab. And… more healing!

“There’s a grace in the waiting, a quiet hope in the not-yet.” — Morgan Harper Nichols

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Wednesday, April 30th – Ups & Downs »