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Episode 4: The In-Between Life : Waiting on the List

"You’re living your life, but you’re also living on a runway. And you don’t know when the plane is coming."

Being “active” on the transplant list isn’t a passive wait; it’s a high-stakes, full-time job. After relocating to Houston, Courtney and Ryder entered the strange, suspended state of the "In-Between." In this episode, Courtney pulls back the curtain on their daily life.

This episode serves as both a story of a mother’s intuition and a practical roadmap for families navigating the transplant journey. Courtney breaks down the Transplant Education Book, and explains the gritty reality of keeping a child "sick enough to need a transplant, but stable enough to survive it.

In this episode, we discuss:

• The Lifelines: Navigating MyChart and why your medical team becomes your new family.
• The Litmus Test: The anxiety of the PFT glass booth and the one number (FEV1) that owned their emotions.
• The Rules of the Road: Understanding the Compliance Agreement, the reality of Status 7 (Inactive), and why infection prevention is a matter of life and death.
• Lung Therapy vs. Play: Why Ryder’s "lung therapy" and OT sessions were deposits into a bank account he would soon need to withdraw from.

Whether you are a transplant parent sitting in a waiting room or a listener following Ryder’s brave journey, this episode explores the discipline, the fear, and the incredible strength required to stay ready for "The Call."

Between Breaths is a space for families walking through pediatric lung transplant. The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.

We’re in this together.

Send a text

This episode of Between Breaths takes us into the delicate "in-between" of the transplant journey. The sacred, heavy space between the decision to move and the moment the phone finally rings.
Courtney shares the emotional weight of choosing "one last Christmas" at home, watching her 10-year-old son, Ryder, struggle to find the breath to laugh during a season of joy. As the calendar turns to 2024, the family faces the daunting "60-minute rule," the logistical hurdle of relocating to Houston, and the exhausting reality of finding medical housing while in the midst of a family crisis.
In this episode, we explore:

• The 60-Minute Rule: Debunking the Hollywood myths of "racing lungs" and explaining the real-time preparation required for surgery.
• The Housing Scramble: A raw look at the pros and cons of Ronald McDonald House, Nora’s Home, and the "miracle" of Project Joy & Hope.
• The Math of a Miracle: Breaking down the complex CAS (Composite Allocation Score) and UNOS systems that determine how organs are matched.
• The Seven Offers: The adrenaline and heartbreak of receiving seven calls that didn't lead to surgery, and why waiting for "optimal" lungs is a gift of its own.

Transplant is a miracle born from loss, and a journey measured in liters of oxygen and miles from home. Join Courtney as she pulls back the curtain on what it truly means to be "active" on the list.

Between Breaths is a space for families walking through pediatric lung transplant. The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.

We’re in this together.

Send a text

"I’m not leaving this hospital without the same kid I came in with."

In this episode, Courtney takes us back to the "shatter point". The day a routine hospital stay for RSV turned into a race for Ryder’s life. From the silent shock of sitting on a cold hospital floor to the experimental "last chance" treatment that required a 24-hour human watcher, this is the raw history of Ryder’s journey.

Courtney discusses the terrifying sounds of the PICU that still trigger medical PTSD years later and the moment they realized "managing" Ryder’s rare lung disease (PIBO) was no longer enough. If you’ve ever sat in a hospital chair and listened to the alarms, this episode is a reminder that you are seen, you are heard, and you are not alone.

In this episode, we discuss:

• The moment "fine" turned into intubation
• The reality of medical trauma and PICU soundscapes.
• The experimental Sevoflurane treatment and the "miracle kick."
• Living with PIBO: The "cocktail straw" reality of breathing.
• The heart-wrenching decision to move toward a lung transplant.

Between Breaths is a space for families walking through pediatric lung transplant. The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

If you found comfort here, follow the show and share it with someone who might need to hear it at 2am.

We’re in this together.