Between Breaths Pediatric Lung Transplant: Before & Beyond

Send us Fan MailIn Episode 8, I’m sharing what happened in the early weeks after Ryder’s bilateral lung transplant, when what looked like steady healing suddenly turned into another fight for his new lungs. After discharge, we were learning our new baseline through clinic visits, spirometry, wound checks, medications, and routine surveillance bronchoscopies. On the outside, Ryder looked stable and was breathing well. But a routine 6-week bronchoscopy revealed acute cellular rejection along with signs concerning for antibody-mediated rejection.In this episode, I walk through what that actually looked like for our family. The shock of hearing the biopsy results, the same-day hospital admission, the placement of a pheresis catheter, and the start of plasmapheresis treatment. I also share the details that matter for other pediatric lung transplant families: how rejection can happen even when a child seems fine, why surveillance matters so much, and what treatment can involve behind the scenes.Ryder was hospitalized from August 1 through August 10, 2024, and underwent an intense rejection treatment course that included IV steroids, IVIG, plasmapheresis, and rituximab. I talk through those treatment days, the emotional weight of returning to inpatient life so soon after transplant, and what it means to realize that transplant is not the end of the fight,  it is the beginning of protecting the gift you fought so hard to receive.Most importantly, I share the hope in this chapter, too. After repeat bronchoscopy, Ryder’s rejection had resolved, his biopsy cleared, and his lung function began improving again. This episode is both our story and a practical look at what post-transplant rejection and recovery can really look like in pediatric lung transplant.If you are a parent, caregiver, family member, or someone walking through this world, I hope this episode helps you feel more informed, less alone, and more prepared for the reality that healing after transplant can be both beautiful and fragile at the same time.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 us Fan MailAfter months of waiting in the unknown, the call finally comes.In this episode of Between Breaths, Courtney takes you inside the moment every transplant family dreams of and fears at the same time, the moment the surgery is over.From the consultation room to the ICU, this is the story of Ryder’s double lung transplant… and the first time his parents saw him with his new lungs.You’ll hear what actually happens during a lung transplant.  The race against ischemic time, the complexity of the surgery, and the reality of recovery in the first critical hours.But more than that, this episode captures the raw, unfiltered emotion of what it feels like to finally exhale after living in survival mode for months.The overwhelming gratitude. The fear that doesn’t immediately disappear. The moment everything changes.This is where the “In-Between” ends… and the “Beyond” begins.Take a deep breath for Ryder today.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 us Fan MailWhat really happens when a family receives the call for a lung transplant?In this episode of Between Breaths, Courtney shares the moment her son Ryder received donor lungs after months on the pediatric lung transplant waitlist.At 7:35 AM on June 17th, 2024, my phone rang. It was a blocked number.Two minutes later, everything changed.In this deeply personal episode of Between Breaths, I share the story of the moment we received the call that donor lungs had been found for my son, Ryder.After months of living in the uncertainty of the transplant waitlist, managing oxygen, BiPAP support, infections, and the constant fear of becoming too sick for surgery, the call we had been preparing for finally arrived.But pediatric transplant isn’t as simple as getting a call and rushing into surgery. This episode takes you behind the scenes of what actually happens between the call and the operating room.You'll hear about:• The emotional chaos of that morning • The shock of realizing transplant was finally happening • The final hours at home before heading to the hospital • The reality of waiting during a 12+ hour lung transplant surgery • The medical details of what Ryder’s body went through in the operating room • And the moment we learned the surgery was successfulThis episode also explains some of the realities transplant families face that most people never see, including the possibility of a “dry run,” the complexity of lung transplant surgery, and the incredible medical teams who make these miracles possible.But most importantly, this episode honors the unimaginable gift that made Ryder’s new life possible.Because every transplant begins with an act of generosity from a donor and their family during one of the hardest moments of their lives.Somewhere out there is a family whose decision allowed my son to breathe again.And for that, we will be forever grateful.Next week, we’ll talk about what happened after surgery, the moment we walked into the Cardiovascular ICU and saw Ryder for the first time with his new lungs. If this story touched you, please share this episode to help raise awareness for organ donation and pediatric lung transplants.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 us Fan MailIn Episode 5, we step away from the waiting room and into the grueling daily reality of surviving the transplant list. Because the truth is, waiting isn't quiet. It isn't sitting by a phone. It's an exhausting, physically draining marathon.I’m sharing the nitty-gritty details that no one warns you about, from doing elementary school math tethered to an oxygen concentrator, to the terrifying reality of the 6-minute walk test, to why I became fiercely unapologetic about protecting Ryder’s airspace in the hospital. We also talk about the emotional whiplash of receiving (and passing on) four separate lung offers in a single month.But this episode is also about the hard facts. If you take away anything from this podcast, let it be this: Pediatric lung transplant is NOT just an adult transplant on a smaller scale. It is an entirely different, incredibly rare medical world. I break down the exact differences, the brutal statistics (3,000 adult transplants a year vs. just 31 pediatric), and why taking transplant advice from social media can be so dangerous for our kids.Amidst the heavy facts, we also talk about the beautiful side of the wait: our incredible village, finding the "Transplant Mom" sisterhood, and honoring the legacy of a kindred spirit named Thomas.In this episode, we cover:Making Houston "home" at Project Joy and HopeThe daily grind: Homebound school, oxygen tanks, and clinic daysThe 6-Minute Walk Test: What the numbers actually meanInfection control and why I became "that mom" in the elevatorsThe Vast Difference: Adult vs. Pediatric Lung Transplant facts and survival statisticsThe danger of social media misinformationThe power of our village and the transplant family sisterhoodA special thank you to everyone who sent cards, gifts, and prayers. If you have the means, please consider supporting the organization that gave us a place to breathe when we were suffocating: https://joyandhope.org/I’m Courtney. And I’m really glad you’re here.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 us Fan MailEpisode 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 us Fan MailThis 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 us Fan Mail"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.

Send us Fan MailIn this first episode of Between Breaths, Courtney shares the story behind her son Ryder’s pediatric lung transplant, and the space between fear and hope that defines this journey.From the moment transplant became real, to the waiting, the uncertainty, and the quiet strength it takes to survive it, this episode is an honest look at what life before and beyond transplant really feels like.This is not medical advice. It’s lived experience.If you are a parent navigating pediatric lung disease, waiting for transplant, recovering post-transplant, or grieving a loss .....this space is for you.In this episode, Courtney shares: • When transplant stopped being “someday” and became urgent • What the waiting does to a parent’s heart • The loneliness no one talks about • Holding grief and gratitude at the same time • Why Between Breaths was createdThis podcast exists to hold space and community for families walking through pediatric lung transplant:  the fear, the strength, the losses, and the miracles.You are not alone here.Follow the show so you don’t miss upcoming conversations with transplant families and professionals who understand this world beyond statistics.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.