Wednesday, April 30th – Ups & Downs
April 30, 2025
The day began after a previously uneventful night, with a new NG tube placed this morning. UNC Hospital typically replaces them every 30 days, and ironically, it clogged today—on day 32.
Dallas sat up (think small sit-up/crunch) in bed while we were talking about her improved eye tracking and increased alertness. Later, she sat up again—higher than before. What a GREAT start to the day, we thought!
Her blood pressure was a bit low, ... Continue Reading
Tuesday, April 29th
April 29, 2025
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 ... Continue Reading
Monday, April 28th
April 28, 2025
Had a pretty quiet night last night. The nurse aides were consistent, checking diapers and turning her every two hours, like clockwork. Vitals stayed steady through the night, although between 3:00 am and 6:30 am, her respiration alarm went off a handful of times (it's set at 12). I noticed that when I repositioned her — getting her a little more aligned and comfortable — the alarms settled down.
During rounding this morning, ... Continue Reading
Sunday, April 27th
April 27, 2025
Dallas had a very peaceful night last night and a slow, relaxing Sunday! The doctors noted that her liver enzymes, which we had been monitoring, have dropped back to normal. They are increasing the dose of her new medication very slowly each day. Other than that, no big changes — and honestly, it feels so nice to not have much to talk to the doctors about.
This morning, Heather got to hold Dallas ... Continue Reading
Saturday, April 26th
April 26, 2025
Dallas had a quiet night last night for the most part, but a little junky and needed some assistance getting clear in the early morning. After she woke for the day her BP was 122/98, quite high for a little girl. Tylenol was given in the meantime until the doctors rounded and we could further assess. The docs feel that it could be likely caused from her becoming more alert and having anxiety with ... Continue Reading
Friday, April 25th
April 25, 2025
Dallas had a peaceful night last night, and started her day off with her final PLEX session of the week. We feel lucky that we were able to keep that schedule on track despite the hiccup in the middle of the week. We managed to escape to the courtyard outside for 4 days in a row, and this time Brooklyn the music therapist was able to meet us out there with her ... Continue Reading
Thursday, April 24th
April 24, 2025
This morning greeted us with a welcome gift: a restful night for Dallas and a significant improvement in her heart rate — around 104 at 7am, a world of difference from where we were just 24 hours ago. Rest really does wonders, and she had a peaceful one with PopPop by her side. That alone set the tone for a much better day.
During rounds, we got reassurance that there’s no immediate concern ... Continue Reading
Wednesday, April 23rd – a Doozy
April 23, 2025
It was a very long night last night. Heather noticed that Dallas seemed bothered early in the evening, and it continued past midnight. By then, her heart rate had climbed to a consistent 130–140s, and the nurses were called in. Her temperature was also elevated to 99.1, and she just seemed very uncomfortable — and then she let out a yell (an actual loud yell), far louder than we’ve ever heard her ... Continue Reading
Tuesday, April 22nd
April 22, 2025
The balancing act of trying to find comfort, care, and rest continued last night. We got the melatonin in around 6:15pm, and Dallas was super ready for bed by 7pm—so, lights out! All was quiet until the nurse’s aide came in for vitals, followed by housekeeping, and then a respiratory therapist came in to demo the cough assist to a co-worker (in training?). Mind you, it sounds like a vacuum cleaner—not exactly ... Continue Reading
Monday, April 21st
April 21, 2025
It was a bit of a restless night last night for both Dallas and PopPop. She just seemed a little more unsettled than the stretch of calmer nights we’ve had recently. We’ve been wondering if the stimulation from Easter — family, celebration, and her first little trip outside — might’ve been a bit too much. It’s such a delicate balance, trying to engage and gently stimulate her throughout the day, without tipping ... Continue Reading