Saturday, April 5th

A few hours into bedtime last night, Dallas’s coughing started ramping up again. The cough assist prior to bed helped for a bit, but by 4am, it became clear she needed more support. The respiratory therapist was called in for another round, as the cough assist treatments continue to help her breathe easier, even if they interrupt rest.

We set a few small goals for the day—give Dallas a bath, get her into her chair as part of her regular turning and positioning schedule, and make sure her eye drops were officially added to her care plan. Feels good to say: all three ✔️.

During rounds, they noted her blood pressure was running a little higher than usual, so that’s something the team is watching. On the upside, her oxygen support was reduced from 1.5 to 1 liter via nasal cannula, which is a great sign that her lungs are still doing good, despite the congestion lingering in her upper respiratory.

Cough assist continues to be the preferred method of helping her clear mucus. Deep suction won’t be kept on a regular schedule anymore, which we’re okay with—we don’t want to overdo it, especially when she’s doing well with less invasive interventions.

The neuro team checked in and decided to run a 24-hour EEG to monitor her “sleep architecture”—basically to see if she’s getting the deep, restorative sleep cycles she needs at night. Healing happens most while we rest, and keeping that day/night rhythm going is a priority now. They’re also planning to introduce Amantadine twice a day, which has been shown to help with brain activity in other ANE cases like Dallas’s. They’ll also follow up on her IL-6 labs now that she’s received Tocilizumab, the medication aimed at calming inflammatory responses.

While Heather was doing some stretches with Dallas, her heart rate suddenly dipped, which definitely gave us a scare. It did it a bit more during the process of getting the EEG setup. Thankfully, it came right back up and stabilized. But it was a reminder: even though we’re seeing some small and positive changes, Dallas is still in a fragile state. Every little thing takes a toll on her body right now.

During her bath, we had a moment that we’ll hold onto tightly. Her eyes opened just a little wider than before. Heather leaned in and reminded her that it might be hard to talk right now, but we can use our signs (we had previously taught Dallas some ASL to help communicate with us) and even that might be hard/tricky too – reminded her that she can also talk to us with her eyes and asked her to blink to let us know she heard her. And she did—twice. It was an emotional experience to hear Dallas’s way of saying, “I’m still in here with you.” She did a little bit more of this eye movement later in the afternoon while we continued talking to her, but it didn’t last very long – she was exhausted from all of the day’s activities and interactions.

We’ve settled into the Ronald McDonald House now, which gives us a more stable place to rest, eat, and reset. We can now receive mail there too—if you’d like to send Dallas a card, here’s the info:

Brett & Heather Neville
Ronald McDonald House – Room 271
101 Old Mason Farm Rd
Chapel Hill, NC 27517

Dallas’s Pop Pop drove up and is on night shift tonight, giving Mom and Dad a chance to get an earlier night and much-needed rest… and showers!  At last check-in, she was coughing less frequently and her heart rate had remained steady since we left. They should be doing a final round of cough assist shortly, and introducing the first dose of Amantadine.

We’re not out of the woods, and this journey is far from over—but each day brings a new sign of strength, a tiny flicker of hope, and reminders that healing doesn’t happen all at once, but in quiet, beautiful moments like a blink, a breath, or a steady heartbeat. Dallas is still getting up, in her own quiet way—and we’ll keep getting up right alongside her

“Every sunset is an opportunity to reset, every sunrise begins with new eyes.” – Richie Norton

« Movin’ on Up – April 4th

Sunday, April 6th – Dallas had some visitors »