Tuesday, May 20th
May 20, 2025
Unfortunately, it was a bit of a restless night for Heather. Although Dallas slept hard, her respiration rate dipped below 12 several times throughout the night, which set off the audible alarms. Heather noted that it often seemed like Dallas gave a little exhale right before each one, almost as if she’d been holding her breath for a bit too long.
The morning was rough. Dallas seemed unsettled and uncomfortable, even with light touch ... Continue Reading
Monday, May 19th
May 19, 2025
Last night was a bit rough for Dallas, as she was pretty restless and awake on and off. We had a suspicion it was her belly bothering her. Things finally settled a bit after we gave her Tylenol around 3 a.m. She started sleeping better after that, but by around 7am she was stirring again. Her heart rate kept spiking into the 140s, which always makes us stop and wonder what’s going on under the surface. After turning her to ... Continue Reading
Sunday, May 18th
May 18, 2025
Last night was a peaceful one with PopPop here. He and Dallas both got some good rest, and it felt like a much-needed quiet pause. He headed home to Wilmington this morning, and as always, we miss both him and Papa when they have to head home. Their visits bring comfort in ways that are hard to describe, and their absence is always felt when they go.
There isn't much to report from the ... Continue Reading
Saturday, May 17th
May 17, 2025
A quiet, steady day—the kind we’re always grateful for.
Kristin from Speech came in today and worked with Dallas on her swallows. There was a bit of a grimace when she introduced an ice chip, and we’re pretty sure it was just too cold for her liking. Aside from that moment, she continued to do well with the practice. We’ll take those small steps.
Rounding was short today, but came with a couple of ... Continue Reading
Friday, May 16th
May 16, 2025
Another good night last night followed by a short(er) update today – which is a good thing.
During Rounding this morning, they mentioned that her steroid medication and taper is continuing to go well, now being taken by mouth. Her next IVIG infusion is scheduled for June 2nd. In the feeding department, her sessions were condensed from 90 minutes down to 60, and she handled the change well. We’ll keep an eye on ... Continue Reading
5/15/25 – Happy Birthday!
May 15, 2025
Papa said he and Dallas had a calm evening last night, which is always good – a good day always starts with a good night.
Rounding with the team was short and concise this morning: since she's doing well with her feed volume change, we'll condense from 90 minutes to 60 minutes starting tomorrow. They felt she was ready today, but with it being her birthday, we didn't want to push our luck.
Kim ... Continue Reading
Wednesday, May 14th
May 14, 2025
Today's update is a fairly short one – it was another simple day for Dallas. Overall, she seemed even more alert today, looking around the room, and moving her head from side to side – the PT/OT must be working 😉
We solidified a plan for her to stay on Heparin for the time being, which puts us at ease having stressed about anticoagulant options for the last several days. In the event ... Continue Reading
Tuesday, May 13
May 13, 2025
PopPop shared that Dallas was moving her head from side to side last night, maybe trying to get a bit more comfortable before bed. To us, that’s a win. Movement like that is always encouraging. Otherwise, it sounded like they had a quiet night and managed to get some decent rest.
Rounds were pretty quick this morning, which usually means there’s not too much to go over. Dallas is now off the “round ... Continue Reading
Monday, May 12th
May 12, 2025
The day started with a good visit from the neuro team. Her cytokine panel came back showing encouraging results — inflammatory markers (IL-1 and IL-6) are looking normal. Her IL-10 marker, which is anti-inflammatory, was elevated, which was anticipated. With that, the team has decided to keep Tocilizumab off the table, since we no longer need it to combat inflammation — a big win! She’ll continue her steroid taper and receive monthly ... Continue Reading
Mother’s Day, May 11th
May 11, 2025
Today we got what we hoped for – a calm Mother’s Day with nothing on the agenda.
Rounding was short and simple this morning: Dallas is continuing to tolerate her feeds and had reached her goal volume by 11 a.m. As long as she keeps this up, we’ll look at clustering some of her meds together via the NG tube instead of using the IV. We learned her cytokine panel is back, so ... Continue Reading