3/31/25 Updates

Our girl had a fairly quiet night. Her BP was a bit higher out of the gate this morning of 131/87 and temp stayed consistent at or near 100 degrees.

Her lungs were a bit junky today, which is frustrating because she doesn’t have any viruses (that testing has revealed) going on. Her nurse started doing chest PT throughout the day to help loosen things up in hopes of producing a productive cough. This eventually helped initiate some coughing spells and cleared some junk.

Although a good thing to be coughing some of the junk up, it causes her respiratory rate to drop, which subsequently causes her O2 to drop down – i.e. it sets off lots of alarms!

She had another round of IVIG started and we were visited from PT/OT. It was super cool that this PT/OT duo (pictured) worked with Dallas back in 2022. It was super important for us to proactively get PT/OT involved ASAP, so that we could perhaps mitigate some of the possible setbacks.

The neuro team came by and found Dallas to be a little less tense (tone) than earlier – maybe a bit more relaxed. She got agitated when neuro was working with her, which is a GOOD sign… basically indicating “stop messing with me!” Similarly, she pulled legs back towards her when PT was working with them – another good response.

During the docs morning rounding we brought back up  that she may have some underlying reflux going on, as she has been complaining recently about her tummy/throat bothering her and has some excess saliva. They made some updates/changes to her meds in an effort to ease those potential problems. An NG tube for food was added – while we hate to see her with it, at least we know she’s getting some much needed nutrition.

She’s currently receiving her next round of steroids and Tocilizumab (referred by the docs simply as “Toe C”), which is a monoclonal antibody medication that targets and blocks interleukin-6 (IL-6), a protein that plays a role in inflammation. We felt Tocilizumab played a bit part in her recovery back in 2022, so we’re hopeful that it will be a key player now as well.

The neuro team wants to do another MRI tomorrow, and it initially sounds like it will be focusing on her back. Since this ANE episode does not appear to have been set up by a virus (which the vast majority of ANE episodes are), they’re trying hard to really  find the “why” as to what caused it. Any insight we can gain, would be super helpful.

Dallas has come to love Dolly Parton and really, what’s not to love!? She’s part of Dolly’s Imagination Library program and receives a book, free of charge, from Dolly every month. Dallas also loves singing 9-5 at the top of her little lungs on some of the mornings when we’re jammin’ on the way to school. Heather and I saw a Dolly t-shirt with the quote below, and it just seems fitting for what we’re going through – we certainly want the rainbow!

“The way I see it, if you want the rainbow, you gotta put up with the rain.” – Dolly Parton

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