Friday, May 9th

Last night wasn’t one of the better ones, unfortunately. Papa said she was uneasy or stirring often, and her most restful sleep came in two windows — early on in the night and then again for about an hour this morning. Through most of the night her heart rate stayed in the low 100s to 1-teens range, which is about where it remained though most of the day. A few vocal sounds while shifting positions made us wonder if her belly might be giving her some discomfort again, though it’s hard to tell for sure. The only real change is the restart and increase of her feeds.

This morning’s rounding brought a few more steps forward. Her continuous feed was increased to 30ml/hour and so far she seems to be handling it okay, though we’re keeping an eye on her BMs for any signs of intolerance. The IVIG finished up today, and there’s talk of reintroducing a few comfort meds like melatonin (as needed), gas-x, and maybe even Amantadine — provided her gut continues to do well with the feeding schedule and neuro feels it would be beneficial.

Yesterday’s X-ray was a relief. It showed no return of the gas in her system, which had been a big concern earlier. Her nurse mentioned that when patients go NPO for a stretch and then start feeds again, acid reflux is a common issue. That’s certainly what we’ve seen with her — reflux has really bothered her all day. We’ve made sure her bed stays elevated, which may help a bit.

Neuro and PM&R may be looped in to discuss Gabapentin, possibly to help with any physical discomfort or even anxiety she’s experiencing. The team is leaning into the collaborative approach here — making sure everyone is aligned on whatever comes next. As for Tocilizumab, it’s still on the table, but seen as most effective earlier in the course of an ANE episode perhaps. If the cytokine labs come back elevated, it could still be helpful, especially given what seems to be some brain stem involvement, which might explain parts of her slower recovery.

The Gastro team weighed in as well, though there’s no definitive cause pinned down for the original pneumatosis. One theory is damage to the gut lining — possibly infection, maybe even a side effect of the combination of steroids and Tocilizumab, which she was on at the same time. It’s not commonly seen, but we’re still learning as we go. There’s another line of thinking that the cardiac issues from last week could have played a part, too. Either way, based on recent imaging, they feel confident the pneumatosis is no longer an active issue. We’ll continue to monitor.

If Tocilizumab is restarted, we’ll watch closely for any signs her belly isn’t tolerating it — distension, pain with pressure, maybe imaging if needed. They’re monitoring her reflux meds as well, and if necessary we can back off feeds to 20ml/hr, but we’re hoping 30ml/hr holds and we keep moving toward her nutrition goals.

This afternoon brought something new — a low grade fever, with no clear source. It’s another reminder of just how complex Dallas’s recovery continues to be, and how even small shifts can throw her system off. Still, she continues trying to connect with us. There are moments when it’s clear she’s working to communicate through her eyes and the soft, deliberate movement of her lips. Even though the reflux was clearly bugging her today, that effort to speak is something we keep holding on to.

PopPop made it up from ILM and traded off shifts with Papa, who’s been here for the last several days, a little earlier this afternoon. Quick side note… they’ve been a TRUE blessing to give Heather and I a lot of nights off after spending long days at the hospital; we’d be lost without them. 

We chatted a little while ago with PopPop and he said Dallas seems to be settling in for the night — maybe a bit less agitated now that she’s a little more comfortable heading towards sleep. We’re all hoping that tonight brings them both the peace and rest they need. It’s what we want most!

“Some days are diamonds… some days are stones.” — John Denver

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Saturday, May 10th »