Monday, May 12th

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 doses of IVIG.

During rounds, they noted that her labs looked good overall, though phosphorus was still a little low. She’s been tolerating feed increases well, which allowed us to switch to condensed bolus feeds every two hours. This also means that we can move her meds back to oral (via the NG tube) and not have to rely on the IV for as many meds.

PT/OT came by and were encouraged by her progress — Dallas had good, intentional hand squeezing when prompted, and showed strong head movement and eye tracking. Over the past 2–3 days, she’s been doing what can only be described as “mini sit-ups” in bed, showing the strength of her core and neck muscles. It honestly looks like she’s ready to climb out of bed — maybe just over it all.

Kim from speech therapy returned today and worked with Dallas using a spoon, cold water, and other tools. She guided Dallas through the motions of closing her lips around the spoon and encouraged swallowing. Kim noted that her movements (like tongue response) have improved since last week. That feels promising, since feeding will be a major milestone toward our next step: in-patient rehabilitation.

Anne from surgery stopped by to remove the stitch from the heart drain line (which had already been taken out). It was just one stitch and she was in and out in minutes. Dallas didn’t seem bothered at all — always a plus.

The echocardiogram will be repeated tomorrow to take a repeated look at what could be a blood clot or thrombus/cast from the IV catheter. Hematology and cardiology will review the results to determine which blood thinner/anticoagulant — Xarelto (oral) or Lovenox (injection) — will be best, as the treatment is the same in either case. This decision has been incredibly stressful for Heather and me. Neither option feels perfect, and both come with unique pros and cons. It’s been difficult to weigh the risks.

What’s most frustrating is that this decision isn’t related to her illness or the normal recovery process of the disease. It’s the result of a one-in-a-million complication — her heart being punctured by her central IV line, leading to unplanned heart surgery. Something no one could have ever predicted or prepared for. Having to make this decision in an already overwhelming situation feels so defeating.

In the morning, we’ll consult with her team, include the pharmacist, and make the most informed decision that we can. A small bit of news about this challenge is that we can switch, at any time, between the two options should we change our minds.

“Sometimes the hardest thing and the right thing are the same.” — (The Fray, All at Once)

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