The Call

What 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 successful

This 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.

Transcript

Hi again I'm Courtney. Welcome back to Between Breaths. In our last few
episodes, we talked about something I call the in-between life. That space transplant families
live in while waiting. We talked about allocation scores. We talked about the sixty minute rule,
and we talked about the constant preparation it takes to keep someone healthy enough for
transplant. Because transplant has a strange paradox. You have to be sick enough to need
new lungs, but still healthy enough to survive the surgery. It's a balancing act that families live
inside every day. I described it before, like living on a runway. Your bags are packed. You're
ready to go, but you never know when the plane will arrive. So you live there waiting for a
phone call that could change everything. And today we're talking about that call. The moment
the runway ends. This episode is called The Call. It was the week of June tenth, twenty twenty
four. If you've ever spent a summer in Houston, you know exactly what I mean when I say the
air feels heavy. It's hot, it's muggy. The humidity feels like a blanket wrapped around the entire
city. That week, Ryder and I decided to venture out and get our pizza fix. We hadn't been to
CiCi's pizza in a while, but we found one nearby and decided to go. Nothing about that outing
felt significant at the time. It was just pizza, brownies, and the usual buffet chaos. But looking
back now, we probably should have known better. Buffets are germ factories. People touching
food. Kids grabbing things with their hands. It's gross. Foods sitting under heat lamps. And
today, post-transplant, Ryder does not eat at buffets. Later that week, on Thursday, June
thirteenth, we went about our normal routine. But Ryder just wasn't acting like himself. He was
quiet. And if you know Ryder, quiet is not normal. At that time, Ryder was already on about five
to seven liters of oxygen, and I could see that his work of breathing was changing. There's a
subtle difference you learn to notice as a parent. It's the effort. How hard their body is working
just to breathe. He didn't have a fever, which helped calm my nerves a little bit. And we already
had a clinic visit scheduled with Doctor Moreno that day, so I figured we would just keep the
appointment and see what was going on. When Doctor Moreno walked into the exam room, he
expected to see this loud, energetic, overly talkative kid he had heard so much about. Instead,
he found Ryder laying on the exam table asleep. Doctor Moreno was immediately concerned.
They ran a viral panel which thankfully came back negative. Ryder had also thrown up that
day, so at the time we believed it was probably a forty eight hour stomach bug, likely from the
buffet. But the reality of that moment is actually pretty terrifying. Remember earlier when I
explained that transplant candidates have to stay healthy enough to survive the surgery? If that
illness had been worse or lasted longer, Ryder could have been placed status a seven status
seven means temporarily inactive on the transplant list, which means if donor lungs became
available, he wouldn't have been eligible. Ryder had a huge weekend coming up and we were
worried he might miss it. It was Father's Day weekend. Ryder's dad had planned a trip to come
down to Houston and take Ryder to Galveston, and there was a big surprise involved. Jeff was
bringing one of Ryder's best friends from Dallas down with him. We hadn't told Ryder yet. We
were just hoping he would feel well enough to enjoy the weekend. Thankfully, by Saturday,
Ryder was completely back to himself. It was just a forty eight hour bug. Thank goodness,
because what happens next changes our lives forever. Sunday rolls around Father's Day, June
sixteenth, twenty twenty four. Ryder his dad, and his best friend were already down in
Galveston having the best time together for the weekend. It was one of those days that felt
completely normal. Happy, easy. The kind of day where you almost forget how sick things have
become. My mom, Baba and Gunner were also in town that weekend so we could all celebrate
together. Later that day, Ryder came back to the house and Jeff made his way back to Dallas.
Now something interesting happened that weekend. Baba happened to have a few extra days
off, which almost never happens. So he and my mom and Gunnar decided to stay a few extra
days. Looking back now, it almost feels like the universe lined everything up perfectly.
Everyone Ryder loved was exactly where they needed to be. The house got quiet, the
weekend was winding down. And then came Monday morning, June seventeenth. And this is
where something every transplant family hears over and over again You were told. Answer
every phone call, even the ones you don't recognize. Even the blocked numbers. Because the
call you've been waiting for might not look like anything special on your phone. And that
morning at seven thirty five a m, my phone rang. It was a blocked number. I answered it, and
on the other end of the line was Nicole, our transplant nurse at the time. She told me they had
received a call about donor lungs and the transplant team had accepted them. That phone call,
the one that completely alters the trajectory of your entire life. Lasted two minutes. Two
minutes. I rolled over in bed and I looked at my husband. Tears were already in my eyes. I
didn't say anything. I just looked at him and he knew. He asked me quietly. We got the call. I
nodded, still listening to Nicole speak, still trying to absorb the words she was saying. Justin
jumped and I mean jumped out of bed and yelled, we got the call! And I just kept shaking my
head. Yes. It was time. We ran straight to Ryder's room. At this point, Ryder wasn't just on
oxygen anymore. He was on a BiPAP machine because his CO2 levels had been rising and
the transplant team needed him on more support. We rushed into the room and said, Ryder
you got them, you got lungs. He was still half asleep. He sat up slowly and looked at us and
said, wait, I got lungs. I ran into the other room and woke up my mom. She sat straight up in
bed and immediately started crying. Justin Gunnar Situ all of us were crying and hugging
Ryder. It was the mixture of joy, disbelief and fear all happening at the exact same time. One of
the funny things about transplant is that TV always portrays it like a dramatic race to the
hospital. Sirens, chaos. But Nicole actually told us something completely different. There was
no rush. We already had a scheduled clinic appointment at ten thirty that morning, so she told
us to just come on in. Then just come in like normal. I had already had a hospital bag packed
since we moved to Houston, so I was ready. The first phone call I made was to Ryder's dad,
Jeff. I said, we got the call and we both cried. Jeff has always been driving around with a bag
packed in his car this entire time. He said he was turning the car around and heading straight
back to Houston. Now, normally the the drive from Dallas to Houston is a little over four hours.
I'm pretty sure Jeff made it in three. After I hung up the phone with Jeff, everyone in the house
was looking at me. They kept asking, what do we do? I remember standing in the middle of the
living room and quietly saying, let's take a shower and go get some food. And then something
strange happened. Ryder actually loves telling people this part of the story. For about thirty
minutes, I just wondered. I walked from room to room in the house. I didn't say anything. I
would walk into a room, cry quietly like my face, and then walk into another room. I was in
complete shock. The happiness, the fear, the disbelief, all of it was hitting me at once and I
didn't know what to do with it. Eventually, I snapped out of it enough to make a few more
phone calls. I called my friend Brooke. When I told her the news, the first thing she asked me
was, what can I do? And I said, pray and tell everyone. I knew I wasn't going to be answering
my phone. I wasn't going to be responding to messages. So I asked her to spread the word for
me, and she did. I also called Farren and Ashley to share the news. And then I called Victoria,
Thomas's mom. She cried and told me something incredible. They were already at the
hospital. She said they would come see us. I called my boss, Toni and she cried too. And after
that I stopped. I didn't make any more phone calls. I didn't want to answer any more questions.
I just wanted to live in those final moments at home with Ryder and my family. We finished
packing Ryder's hospital bag. Now, most of it had already been packed, but we had added a
few last minute things. One of his favorite anime blankets and a portable fan, Lala had also
requested time off work that week and was making plans to drive down. And looking back now,
it's strange how perfectly everything lined up. Everyone Ryder loved was exactly where they
needed to be at exactly the right time. At ten thirty that morning, we walked into clinic. Me,
Justin Situ Gunner Ryder. We were so flustered that we actually forgot his BiPAP machine. So
Justin had to run back home and get it. But I want to pause here for a moment, because the
medical notes from the visit tell a very important story for anyone listening who is navigating
end stage lung failure. This information matters. It shows how sick Ryder truly was beneath his
brave face. The nurse noted that Ryder appeared talkative and, well, appearing with no fever
and no more vomiting. Doctor Moreno's notes painted a real picture. Ryder was officially
diagnosed with chronic respiratory failure. His lungs had post-infectious, bronchiolitis
obliterans, and bronchiectasis. This meant his airways were scarred, severely dilated, and
prone to repeated bacterial infections. One of those infections was pseudonomas, which
required intense treatment, including IV antibiotics and inhaled tobramycin cycles to
understand how hard Ryder's body was working. Just to survive, you have to look at his
oxygen needs at home. His baseline oxygen requirements were three to five liters at rest, five
to seven with activity and seven to eight just to take a shower at night. He required a BiPAP
machine set at twelve over six with six liters of oxygen bleeding into the system that morning.
They also did pulmonary function testing. Ryders fev1 the amount of air he could force out in
one second was only twenty five percent of what it should have been. He was pushing out just
point four two liters of air. A chest X-ray taken the day confirmed his lungs were hyperinflated,
meaning part of his left lung base was essentially collapsed and nonfunctioning. They also
reviewed his six minute walk test history back in September. He could walk three hundred and
fifty seven metres. But by April, just two months before the transplant call, he could only walk
about eighty metres. During that short walk, his heart rate spiked to one hundred and ninety
one and his oxygen dropped to a terrifying fifty nine percent on room air. That distance was
only thirteen point nine percent of what a healthy child his age should be able to walk. Ryder
was failing. The lungs arrived exactly when they needed to. Even after receiving the call, the
transplant team reminded us of something that that every transplant family fears the dry run.
They explained that it wasn't truly guaranteed until the surgery actually started. Sometimes
donor lungs are accepted, but once surgeons evaluate them in person, they determine they
aren't viable. So until Ryder was actually in surgery, nothing was certain. We finished the clinic
visit, grabbed some lunch, and then checked into the third floor admission room. WT 1430 And
then we waited. At six thirty five p m, Nicole called again. She told us they were still working on
an operating room time. It would likely be Tuesday night or early Wednesday morning. Ryder
was allowed to keep eating, which meant we waited some more. Then at nine thirty p m, the
call finally came. The O.R. team had officially been set. Midnight. Going into Wednesday
morning. Tuesday evening was a blur. Doctors came in and out of the room. There were lab
draws, paperwork, conversations. Doctor. Heinle the primary surgeon came in to review the
surgical consents. Doctor Moda, the anesthesiologist, came to evaluate Ryder before surgery.
Meanwhile, Ryder was just hanging out in the room playing a game. His blood pressure was
slightly elevated, probably from the nerves and the excitement. Everyone was trying to stay
calm, but underneath it all, we all knew something enormous was about to happen. Eventually
midnight arrived. Right before they came to take Ryder back, Uncle Tim called. We'd gathered
around the phone, all of us holding onto Ryder, and we prayed. We prayed together and said
our goodbyes. At exactly twelve oh eight a m on Wednesday, June nineteenth, they came to
wheel him out. Surprisingly, Ryder didn't seem nervous at first, but the walk down those
hospital hallways felt like it lasted forever. It was probably about ten minutes, but in that
moment it felt like time slowed down completely. As we approached the heavy doors leading
into the operating room, Ryder was lying in the bed with his oxygen flowing. The
anesthesiologist looked at us gently and said, it's time. And in that moment, the reality hit
Ryder. He looked up at me and said, mom, I'm scared. He hadn't cried the entire time, not
once. But in that moment, the tears came. The doctor stepped in immediately and said he
could give Ryder something through his IV to help calm him down, something that would work
in seconds. Ryder agreed. And I kid you not, within seconds Ryder went from crying and being
terrified to giggling and laughing. It completely changed the tone of the goodbye. All four
parents me, Justin, Jeff and Samantha hugged him so tight Ryder was laughing. There were
no more tears. But the four of us, we were an absolute mess. Ryder actually sat up and waved
at us as they wheeled him into the operating room. We stood there watching, saying goodbye
until the doors closed and then we just stood there. Eventually, I sank down and sat on the
floor in the hallway and cried. We all cried. The hallway was quiet. It was incredibly hard.
Eventually, we made our way to the waiting room. They had told us the surgery would take
about twelve to fourteen hours, so I assumed we would be taken somewhere comfortable,
maybe a room where families could sleep or rest. That is not the case. When we arrived, the
nurse asked, so where are you staying? I looked at her confused and said, well, where are you
putting us? She casually replied that most families go back to their hotels. Excuse me? People
leave during this time. I looked right at her and said, no ma'am, that will not be us. So where
can we stay? She repeated that the surgery would take twelve to fourteen hours. I said I
understood, but I was not leaving the hospital. So she told us we could wait in the waiting room
and took us to a floor that honestly felt completely deserted. There was not a single person
there, just a waiting area and chairs. No beds, no couches, just chairs. So the four of us made
the best of it. We pushed chairs together to try to make something that resembled a bed. Not
that anyone was actually sleeping. Now. My husband had brought something with him, a
packable cot. I remember laughing at him earlier in the day at the house and saying, we're not
going to need that. Turns out, we absolutely did. Justin set it up and looked at me and said,
babe, do you want to use it? But my stubborn self said, nope. I had already made fun of him
for bringing it, and now it turned out to be the best idea ever. So of course I had to pretend like
I didn't care. Instead, I made a little pallet on the floor using pillows and blankets from Ryder's
hospital room that I took, and I laid down on the hard hospital floor. While we were laying there
in that empty waiting room, Ryder was fighting the biggest battle of his life. At one twenty
seven a m, my phone rang. It was Nicole. She told me they had good visualization of Ryder's
donor lungs. They looked healthy. The surgery was officially moving forward. From that point
on, the cardiovascular OR team would be the ones calling us with updates that monumental
call, lasted one minute. I immediately turned the volume on my phone up as loud as it could
go. And just like they promised, the call started coming. At two twenty seven a m, the CVOR
nurse called with an update. Then again at four fourteen a m. Every time the phone rang, all
four of us shot straight up. I would put the phone on speaker so everyone could hear and we
would listen to every word. Hanging on for every update. While we were laying there in the
empty waiting room, Ryder was in the operating room fighting. Looking back later at the
anesthesia notes from that night, it's almost staggering to read what his body went through.
Let's go through it. Before the surgery even began, Doctor Mota classified Ryder's physical
status as ASA 4 - emergent in the medical world. That classification means the patient has a
severe systemic disease that is a constant threat to his life. Once they got Ryder behind the
operating room doors, the team moved quickly. At twelve fifty a m, using ultrasound guidance,
Doctor Moda placed a twenty gauge arterial line directly into Ryder's right femoral artery. This
line allowed the surgical teams to monitor his blood pressure, beat by beat, and draw
continuous blood gases through the transplant. Fifteen minutes later, at one oh five a m, they
placed a triple lumen central venous catheter into Ryder's right internal jugular vein in his neck.
This central access was necessary so the team could monitor the pressures around his heart
and deliver powerful medications throughout the surgery. The moment the surgery officially
moved forward, they began administering large doses of immunosuppressive medications.
Ryder received five hundred milligrams of intravenous steroids, along with mycophenolate and
a medication known as rabbit ATG. Rabbit ATG works by targeting and depleting specific
immune cells so the body doesn't immediately attack your newly transplanted lungs. All of this
was happening while we were laying on the floor in an empty waiting room, staring at our
phones and waiting for them to ring. At six forty two a m, the phone rang again. The nurse told
me that the donor lungs were finally en route to the hospital, and that Ryder was fully prepped
and ready for the transplant. I remember staring at the phone and saying, wait, they aren't
even here yet. At that point, the surgical team had already been working on Ryder for hours.
The surgical records later showed that Ryder underwent a bilateral lung transplant using a
cardiopulmonary bypass machine. He remained on the bypass machine for exactly three
hundred and thirty three minutes. That's more than five and a half hours for five and a half
hours. A machine was pumping his blood and oxygenating it for him while the surgical team
carefully removed his old lungs. Then the next several hours were spent attaching the donor
lungs and reconnecting the airways and blood vessels. It's an incredibly delicate process.
Every connection has to be perfect because those lungs are about to become someone's new
life. The phone continued to ring throughout the morning. Another update came at eight thirty
eight a m, then again at ten thirty six a m. Each time the phone rang, the four of us would sit
straight up. I would answer the call and immediately put it on speaker. We would listen to every
word, trying to read between the lines, trying to hear reassurance in the voice on the other end
of the phone. Before Ryder left the operating room, the surgeons also placed four large chest
tubes to drain fluid from his chest cavity. Those tubes are necessary after lung transplant to
allow the lungs to fully expand and to prevent fluid from collecting in his chest. And then finally,
the last call came at twelve eleven p m the phone rang one more time. The nurse told us that
Ryder was done. The surgery was successful. She told us that Doctor Heinle would be coming
out shortly to speak with us. I don't think I took a full breath that entire time we were waiting. I
felt like I had been holding my breath for twelve hours. And then Doctor Heinle walked in the
room. He looked exactly like someone who had just completed a twelve plus hour transplant
surgery. Tired. Focused but calm. He looked at us and told us Ryder was great. His new lungs
were working beautifully. He didn't even need to be on ECMO support, which can sometimes
be required during or after transplant. And he told us we'd be able to see Ryder soon. In that
moment, the overwhelming wave of relief hit me all at once. This man had just saved my
child's life. I was and still am eternally grateful for his hands, his skill, and his mind. For the
entire team that worked on Ryder that night. I am eternally grateful. And in that emotional
moment, I blurted out the first thing that came to my mind. I asked, can I have a hug? I don't
even remember what happened next. I don't remember if he answered yes. I don't remember if
he said anything at all, because before he could respond, I had already run towards him with
my arms wide open and wrapped him in the biggest hug. I probably held on for what felt like
five minutes. It was probably closer to five seconds and then I let go. Doctor Heinle quietly
turned around and walked out of the room. Later on, I learned something pretty funny.
Apparently Doctor Hinley never actually answered my question. He just stood there, slightly
stunned, while I bear hugged him and cried into his surgical coat. His nurses came up to me
later and told me they couldn't believe I had done that. It quickly became a running joke on the
cardiovascular floor. In the days that followed, whenever Doctor Heinle would come in to check
on Ryder, I would look at him and say, so, are you here for another hug? And every time he
would look at me completely stoically and say no. And then quietly slip out of the room. It was
exactly the laugh we all needed after everything we had just been through. And just like that,
the runway was gone. We had taken flight. Transplant is a miracle that comes from loss
 Somewhere. Another family made an unimaginably generous decision during
one of the worst moments of their lives. Because of them, Ryder is here.
We don't know our donor family and we may never know them. But to this day,
I write letters through Lifegift, acting as the bridge between our family and theirs. I tell them
about Ryder I tell them that he is laughing. He's running. He's living. Next week we're going to
talk about what happened after the surgery, what it was like walking through those ICU doors,
and the very first moment we saw Ryder in the ICU with his new lungs. Take a deep breath
today. I'm really glad you're here.