Friday, April 18th – Central Line, Surgery, and a Bit of Relief

Last night was a restless one for Heather and me. The open-ended questions swirling around today’s central line placement, whether we’d start PLEX (plasma exchange), and just the general unknowns left our minds spinning. This morning didn’t do much to help – Dallas’s heart rate was noticeably lower than her norm, and while that might’ve not been much of a concern to her team, it was enough to amplify the unease.

During morning rounds, we finally got some of the clarity we were hoping for. We learned that the central line they’d be placing should last for two to three weeks, meaning it won’t need to be replaced mid-treatment. That was a relief, especially since Dallas is set to begin five sessions of PLEX roughly every other day. Knowing the line would hold for the duration took at least one big variable off the table.

PT and OT stopped by and worked with Dallas down on the mat, though I’ll admit our attention was pretty divided. Most of the morning was spent navigating the details and logistics of the central line placement, surgery, etc., so we weren’t as hands-on during her session as usual.

Dr. Harrison Beardsley, a resident from surgery, stopped in and provided exactly the kind of grounding, informative conversation we’d been craving. He explained the procedure in detail: Dallas would be under general anesthesia and intubated for the central line, which would be placed just below her right collarbone, guided by imaging, and would end in the Inferior Vena Cava (IVC) – a large vein that returns deoxygenated blood from the lower body to the heart. It would be a non-tunneled line, specifically compatible with PLEX. We’d asked about using a PICC line, but were told it wouldn’t be viable for the higher-volume flow PLEX requires.

We later met with the anesthesiologist and shared our concerns. She was kind and thoughtful in her response, explaining the precautions she’d take given Dallas’s current condition. She mentioned that Dallas might have some coughing after the procedure — possibly a good thing, as the anesthesia could help “open up” parts of her lungs that haven’t been active while lying down so much. There’s also a chance she’ll be a bit more drowsy for the next 24 hours.

Dr. Tracey, the surgeon performing the procedure, stopped by the surgical staging area as well. She came to UNC Children’s from Duke about a year ago and was previously the director of pediatric surgery there. According to Dr. Beardsley, “she’s really good.” We felt reassured knowing Dallas would be in such experienced hands.

The surgery itself went smoothly and right on schedule. What a relief. Even better, the bloodwork results leading up to it – CRP and other labs – came back within normal range. A little bit of good news we didn’t even realize we needed.

This afternoon, since waking up from surgery, Dallas seems more alert. She enjoyed listening to Heather read some books with her and appeared to do more tracking with her eyes, maybe a bit more responsive, and even showing mouth and tongue movements when we talk to her — like she’s trying so hard to speak. While subtle, it’s encouraging given the last two days of her being pretty low key.

A member of the surgical team came by late in the afternoon to check the central line site, and everything looks good — no bleeding, and the dressing is very well intact. Tylenol is scheduled every six hours for the next day to help her stay comfortable.

We didn’t get to start PLEX today, but the line is in, and Dallas will be ready to begin her first session Monday morning. For now, she’s resting peacefully with PopPop, who drove back up and volunteered for night duty. We’re hoping tonight offers a little more rest for Heather and me too — this surgery was a big one, and Dallas handled it with such quiet strength.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” — Thomas Merton

« Thursday, April 17th

Saturday, April 19th »