Each week or month that passes from the previous blog entry, I tell myself I should post an update. But the truth is: when the medical noise quiets, I don’t want to disturb the silence. Ordinary life is precious.

That reprieve has come to a jarring halt, and we’ve been launched back into medical uncertainty. So…where did we last leave off? Let’s ease in with the (uncharacteristically) simple one…😉

Eli

You may remember that in October Eli had surgery to address issues with the plates and screws in his jaw. There are still future steps ahead, but those have been on hold while we’ve been navigating heart care.  He’s healed well from the procedure and is doing great – even after testing positive for flu the day after Kya and I returned from Vanderbilt. He’s taking college classes and held down the fort so Eric could join Kya and me in Nashville at Vanderbilt for a couple of days. (Yes, we left our 20-year-old alone in our house for a few days…and yes, both he and the house survived. Truly, he did very well. 😊)

How We Landed at Vanderbilt (Vandy)

In the summer, we learned that one of the ARVC specialists from the John Hopkins ARVC Clinic (the only dedicated ARVC clinic in the U.S.) had moved to Vanderbilt to open a clinic there. We had already heard wonderful things about the cardiac care at Vandy, and this gave us a compelling reason to make the 3 ½-hour trip – and it has proven worth it.  

We quickly established care with the ARVC specialist, and then with the Vanderbilt Heart Failure Team. Since then, we’ve been in this in-between space, determining the best way forward with care between Vanderbilt (3 ½ hours away), and local care.

The Problem

While at Vandy, she had consults with an excellent team of specialists. There are two primary issues:

1. The valve is wide open from the effects of ARVC.

2. Her ICD lead is pinning one of the valve leaflets.

The value/structural team has some very specific experience with the type of intervention she may need. That expertise has reassured us that, even with the logistical hurdles, we are exactly where we need to be.   

Next week we have follow-up appointments with the valve and ICD teams to determine what interventions might be possible. For now, we’re managing her symptoms at home and pray we can continue to do so.

Unseen Battles

Now that you’re caught up on the medical side, I want to share a few battles (of many) that come with the territory – the parts you may not see. And for this next part, you’ll hear from Kya herself.   

“Hospitals are tough, point blank. However, I cannot help but be grateful for my supportive parents who can be with me (almost) every step of the way. I also want to shoutout all the nurses who helped me through this difficult time, there were truly some amazing people who stepped in to help me feel better! 

I know on this blog we give a lot of information at once, and use some medical terminology that may be confusing. I am here to share some of the emotions that come behind the terms “wide open heart valve”, and “moved to the ICU”. 

When my doctor called me after normal work hours and said, “I think you need to be admitted,” I was already dreadful and stressed thinking of the logistics of staying in the hospital. I mean, it’s no resort! Unfortunately, what also crosses my mind when I’m not feeling my best and my doctor wants me admitted – will I be leaving the hospital at all? 

Morbid a bit, I know. But can you blame me? I’m 22 with a severely dysfunctional and decompensating heart. I don’t have the luxury of “getting better”, because my disease will continue to progress. So, yes, I am worried, I fear the future, and I am scared of what is to come. Please pardon my dark thoughts, and thank you for sitting with me through this.

Yesterday, after a few days of returning home, I cried for the first time in a while. Not a lot of tears, but enough to allow myself to listen to my body and see what she is trying to tell me. I had been pushing a lot of things out of the spotlight, emotionally speaking. Trying to be strong for my family, and maybe even trying to protect myself from pain that I did not want to deal with yet. But the funny thing about cramming something down, is that once you close the lid it all pops out at once – like a Jack-in-the-box. To close, I love each of you for being so supportive of my family through these times. It doesn’t matter if you donated, were there for emotional support, a meal, flowers, or reposting our story – We appreciate you!” ~Kya  

Caregiver Plot Twist: Lobby, Car, or Hotel

When I arrived at Vanderbilt I quickly inquired about staying in the room with Kya on the step-down unit. The answer was an enthusiastic “Absolutely”! When she was moved to ICU, I asked again and was assured that I could remain with her overnight.

Then, after 4-5 days (it’s a blur), at 12:30am, we were woken up and told she was being moved out of ICU and back to step-down. Unbeknownst to us until we arrived to her new room, she had been placed in a double room. I quickly realized I would not be able to stay. While I got Kya settled in, Eric worked to find me a hotel room so I wouldn’t have to sleep in a hospital lobby. I even briefly considered sleeping in my car, but even my stubbornness has temperature limits.   I may not have slept in the lobby (or in my car), but I did have a good cry in both before I pulled myself back together. I was exhausted. Getting a hotel room was probably the best thing that could have happened at that point (finally, uninterrupted sleep), but I couldn’t fully appreciate it until at last I crawled into my bed at 2am.

So, lesson learned. Caregiving isn’t just about being present, it’s also about knowing when you need a bed, a shower, a moment to breathe. Rest isn’t a luxury, it’s a lifeline. Sometimes that lifeline looks like a last-minute hotel key card at 2am.

Mom Moment

There’s a part of this story I haven’t named — the part that belongs to me as a mom. Watching your child possess courage AND kindness, to stay steady in a body that keeps throwing punches… it does something to you. You learn to hold fear in one hand and determination in the other. You learn to advocate fiercely while comforting softly. And sometimes, you cry in a lobby or a stairwell because love can be both fierce and exhausted. Mothering through medical uncertainty is its own kind of ache — steady on the outside, breaking and rebuilding on the inside, over, and over, again. And no matter how many times this road knocks us down, I will rise with her every single time.

Closing Thought

We share these stories because it is the reality – the layers of medical life that drain time, energy, and sometimes even hope. Sharing also offers some comedic relief! There are many more untold battles and they are exhausting. I’m grateful I have some experience navigating the system and advocating for my children, but I often think about those who are managing illness and these battles alone. It’s no wonder people end up back in the hospital, or worse, don’t recover.   

For now, we’re putting one foot in front of the other, grateful for the quiet moments and following the lights of compassion and clarity as we navigate whatever comes next. 

Thank you for all the love and support! We may not reply to every comment or message, but we DO read each and every one. Your kind words and prayers continue to be a light in the difficult moments.

Coming soon: Perspectives from the boys!