Tuesday, May 6th

Because of last night’s lower heart rate scare, we ran the full gamut of tests up until close to midnight: new chest leads, chest X-ray, EKG, echocardiogram, blood labs, etc. Thankfully, each test brought with it a bit more peace of mind that things were OK.

Since then, her heart rates have been more appropriate, and she and PopPop had an otherwise uneventful and restful remainder of the night. We may never know the true reason for the dip in heart rate, but perhaps the various meds she’s on were the cause. In any case, the team continues to test, monitor, and analyze for any changes.

Dallas had another dose of IVIG today, which felt good. We’re slowly getting back on our meds and therapies for what we’re here for: healing the brain and working on neuroplasticity.

Neuro wants to continue holding off on the Tocilizumab until we get the cytokine results back—and maybe even longer. Tocilizumab carries the risk of disturbing or causing issues in the gut, and with the Pneumatosis/NEC going on, we don’t want to take any chances. There’s another med, Anakinra, that’s believed to work similarly but without the gut risks—it may be up next.

While she’s been “NPO” (on bowel rest with nothing in the belly), we learned that the pharmacy team has added levocarnitine to her Peripheral Parenteral Nutrition (PPN—nutrients delivered directly into the bloodstream via IV), which we’re also feeling good about. The neuro team says there’s solid data supporting this supplement for her recovery and beyond.

Speaking of getting back to routines, PT/OT came by again. They got Dallas onto her bench and working on trunk and head control. It was very cool to see her raise her forearm and hand, as if to signal “All Done!” toward the end of her session. This may be the first intentional movement we’ve seen so far in her recovery. Most previous movements were reflexive—responses to stimuli like stretching or limb movement.

A member of the surgery team stopped by to check on her surgical site—stitches and all still look good. We have the OK to remove the central line bandages, which helps reduce unnecessary lines, dressings, etc. Dallas will continue to be on sternal precautions for the next six weeks, so no tummy time for now.

This morning’s abdominal X-ray continued to show improvement. Another X-ray is scheduled for tomorrow, and then the team will make a plan for restarting feeds. They’ll continue using X-rays to confirm things are moving in the right direction. The surgeon who placed the central IV line feels strongly that the gut issues are related to low heart perfusion.

The cardiac team came by and shared that the excess fluid around the heart is gone. The heart’s squeeze is good—normal and even on both sides. The “thrombus/cast” in question is still present and looks unchanged. The good news: it’s not stringy, which means it’s less likely to break off and become a concern. We’ll probably repeat an echocardiogram next week unless the hematology team requests one sooner.

Toward the end of the day, Dallas seemed to intentionally squeeze both mine and Heather’s hands on command. While done softly, it was definitely purposeful. Another sign of intentional movement we haven’t seen before. We’re excited and optimistic—this feels like another positive step forward.

Papa is up from ILM and staying with Dallas tonight. He brought a slew of treats, which should bring some much-needed comfort here in the hospital—especially the “no-bake” cookies MeeMaw packed, which he’s already winning over the team with! We’re hoping for a quiet night and for continued progress tomorrow.

“All the stars lighting up the night sky—that’s what hope looks like!” – Sweet card from Andrea ❤️

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