Gabby Update: 11/10/25

This past week, we traveled to Colorado with Gabby to meet with her heart team and have tubes placed in her ears. Please keep in mind as you read this that I have no medical background aside from caring for Gabby. Corey and I did our best to comprehend the overwhelming amount of information that was presented to us.

Good news: She absolutely rocked her tube surgery — it took about five minutes! While she was under, they were also able to do an echo and draw labs. We were on cloud nine hearing that her right ventricle function has slightly improved, now being called “mild dysfunction” instead of “mild to moderate.” As her cardiologist at home said, “Totally Gabby’s MO to prove them wrong.” Gabby hasn’t shown any improvement in heart function since her Glenn in August 2023, when it was considered "moderate dysfuntion." BIG WIN. Single ventricle patients who have moderate dysfunction typically don’t qualify to receive the Fontan.

Walking the cardiac floor, seeing tear-stricken mothers, and having flashbacks of those long months confined within hospital walls brings a familiar ache to my chest. Though our little girl has made so many gains over the past year — walking, talking, improved eating, and now even some cardiac improvement — there are still major concerns on the table that make thinking about her future simply daunting.

We had a 2.5-hour meeting with Gabby’s heart failure doctor and the single ventricle team that left us feeling a bit deflated. Dr. Simpson (her heart failure doctor) wasn’t very optimistic about Gabby getting the Fontan, but she also didn’t make us feel great about the transplant route either. They laid out the transplant process and what that would look like.

After meeting with her team and really understanding the risks at stake, it’s beginning to feel like pushing for the Fontan might be really dangerous for Gabby — especially considering all her lymphatic issues. Essentially, if she fails the Fontan, her odds of surviving a transplant afterward are slim. But if she skips the Fontan and we list her directly for transplant, as she is now (relatively stable and clinically healthy), she would be a Category 2. In Category 2, she could wait for her hero heart from home.

I asked how many Category 2 patients have actually received a heart, and they said it’s never happened. The next category up is 1B — and only one child in the past three years at Colorado has received a heart listed as 1B. As morbid as it sounds, we would essentially have to wait for her heart to fail (which it will) before she’d be categorized as 1A, meaning she’d then have to wait in-patient for a heart. Glenn function typically lasts only until kids are around 3–5 years old. The average wait time for a children’s heart transplant in Colorado is about a year.

And to really take the wind out of our sails, we asked about Gabby’s blood type and how that affects her odds of receiving a heart. Unfortunately, Gabby’s blood type is O+, which isn’t ideal. Type O+ candidates represent the largest group on the waitlist, but they face higher waitlist mortality, longer wait times, and are more likely to be transplanted into recipients with a different blood type. Due to the new organ allocation system, O+ recipients are less likely to receive a heart transplant and more likely to be delisted than other blood types.

Though her echo looked better — and as exciting as that is — all the pieces of the puzzle need to align. Unfortunately, her NT-proBNP level doubled to 12,600. This number indicates the degree of heart failure. I asked if any Glenn patient with an NT-proBNP this high had ever gone on to receive the Fontan, and they told me no. I am fully aware of how alarming this number is. I’m currently following a little boy on the transplant journey whose mom recently posted his BNP at 10,000.

Despite all this doom and gloom, we don’t feel completely hopeless. Thankfully, there are still a couple of things they can try to figure out why this number is so elevated. This week, Gabby will start a new medication called dapagliflozin, which will hopefully help lower her BNP and potentially allow her to wean off Lasix. They wonder if her heart may be a bit stiff, and this medication is supposed to help it relax. If it doesn’t work to lower her BNP, then hopefully we’ll get some answers from her cath or MRI in the coming months.

It’s hard, because I think some of these big decisions about what path we’ll go down are still 2–3 years away. This state of limbo feels like a double-edged sword in so many ways. Even if Gabby’s BNP comes down, we’d still need to address her lymphatic issues before proceeding with the Fontan. Her team expressed how lymphatic interventions can be really dangerous too.

Corey and I are feeling the weight of the world this past week. Not having a clear answer or direction to go in is unsettling. We wish more than anything that we had validated confidence from her medical team that Gabby will be okay. For now, the only thing we can do is continue to take this all one day at a time and trust God’s plan for her.