Thursday, May 1st

Dallas had a really good night last night, which was a bit of a relief after all of yesterday’s excitement. She had two BMs overnight and wasn’t disturbed by them at all, according to the vitals – a great sign! The plan was for PLEX to come in early, before any feeds started, to catch her while she was stable and before making any changes to her day.

She was super sleepy/tired this morning, and while awake, her heart rate was hovering in the low 80s – maybe a bit too relaxed. PLEX required a blood draw for their type and screen before they could get started, as the previous one (meant for yesterday’s canceled session) had expired after three days.

During rounds with the doctors, we learned that the new plan is to begin PLEX tomorrow instead, with both IVIG and Tocilizumab infusions scheduled for Saturday. Yesterday’s X-ray showed the NG tube was in good placement, though radiology recommended additional imaging, as air and gas still appeared to be excessive.

Between 4–5 p.m., her heart rate was hanging in the low 60s. We questioned whether this might be the result of adjusting her Gabapentin dosage (now receiving 90 ml instead of the previous 60 ml), and whether her being somewhat “out of it” was a sign that the dose is too high. When she got a new IV, it didn’t even phase her – vitals-wise – which supports our suspicion.

A surgeon came in and said they want to get a CT scan to evaluate her belly, which is still distended, and she hasn’t had a feed in over 30 hours. They plan to replace her NG tube with a “Replogle” tube, which allows for proactive suctioning of stomach contents – hopefully offering some relief. By this point, her heart rate was in the upper 50s to low 60s – lower than we’re comfortable with.

The attending physician – the same one from last night – came in and confirmed they’re ordering a stat CT. The goal is to be extra cautious and make sure there’s nothing serious going on in the abdomen, given the excess gas and air seen on the X-ray. She also ordered a full blood panel (from both the central line and a fresh arm stick) to check for potential infection, electrolyte levels, and other markers. They’ll also start her on antibiotics proactively, just to stay ahead of any possible infection.

We asked when the lower heart rate would become a real concern. The doctor said that if it drops to 50 and stays there for a few minutes, she would call a rapid response to bring in the PICU team for a quick assessment and to determine next steps. We’re hoping things get figured out well before it comes to that.

It’s now 9pm, and her NG tube has been changed to the Replogl-style and they’re slowly removing a bit of stomach contents. It was a bit of relief to see her heart rate elevate during the swap, as the prior blood draw didn’t seem to rattle her at all. We’re awaiting the “stat” CT scan and her heart rate has hanging out around 60 pretty consistently for the last hour. We’re hoping to find some answers to these lingering questions and have a solid game plan for tomorrow.

“And when the night is cloudy, there is still a light that shines on me. Shine until tomorrow, let it be.” — The Beatles, “Let It Be”

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