Thursday, April 3rd

Dallas had a series of encouraging moments today that highlight her resilience and the dedicated care she’s receiving.​

During the morning with Heather, Dallas responded to stimulation by reaching for her right hand and bending at the elbow—an action the doctors have termed a “more appropriate response.” This mirrors the progress she showed with her left arm yesterday, signaling additional improvement.​

She experienced a significant coughing episode, managing to expel some mucus. She appeared more alert (perhaps?) during the process, bringing her right hand to her mouth and bending at the elbow. Post-coughing, she exhibited a bit of moaning and groaning, which we’ve heard very little of. We were both there to reassure her that everything was OK.​

Given the increased coughing and the potential risks associated with bolus feeds, we discussed with the team the possibility of delaying their reintroduction. They agreed that holding off makes sense at this time.​

Recreation therapy visited, engaging Dallas with stories and sensory activities. These interactions seem to bring a positive energy to her day, breaking the monotony of hospital routines.​

Rounding Notes:

• Stable vitals.

• No new labs.​

• Final IVIG dose administered today.​

• Initiated steroid taper.​

• Transitioned back to slower, continuous feeds.​

• Implementing chest PT every two hours, or as needed to aid in clearing mucus

• Heather suggested adding Co-Q10 to Dallas’s regimen; the team is reviewing this alongside previous nutritional supports, like biotin from 2022.​

Physical and Occupational Therapy introduced a chair to change Dallas’s positioning, promoting better blood flow and movement. Stretching her ankles was notably easier and less tense compared to earlier sessions this week.​

Brooklyn from music therapy brought in a guitar and shakers, serenading Dallas with tunes like “9 to 5” by Dolly Parton, “Wagon Wheel,” and “Three Little Birds.” The music, much like recreational therapy, provide a welcome diversion and uplift her spirits.​

In a lighter note, Dallas had a significant bowel movement today—a small but meaningful victory in her recovery journey!​

We also secured accommodations at the Ronald McDonald Family House here in Chapel Hill. Having a place to rest, shower, and find a semblance of normalcy is a big relief for us.​

The respiratory team introduced a cough assist machine to help Dallas clear mucus more effectively. This device simulates a cough by delivering air and then quickly suctioning it out. Dallas has been struggling to clear mucus from her upper respiratory system, and this intervention aims to alleviate that burden.​

Prior to using the cough assist, nurses Katie and Fatima attempted deep suctioning. Dallas didn’t tolerate it well, with her heart rate dropping to 30 bpm, but she quickly stabilized. However, the cough assist, administered by Lupe from respiratory therapy, proved effective. Post-treatment, Dallas’s coughing frequency decreased significantly, allowing her much longer periods of rest.​

While the floor was ready for her transfer, the team decided to keep Dallas in the PICU a bit longer due to her current challenges with secretion clearance. We’ll continue monitoring her breathing, assisting with mucus clearance, and administering cough assist therapy as needed. Once her condition stabilizes with clearing the mucus further, plans for her transfer to the regular floor will proceed. We’re hopeful for continued progress in the days ahead.

​“Although the world is full of suffering, it is also full of the overcoming of it.” – Helen Keller

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Movin’ on Up – April 4th »