The First Breath of a New Life

After 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.

Transcript

Hi everyone. I'm Courtney and this is between breaths. If you've been following along, you know we've spent the last few episodes living in the in between. We lived for months in that strange suspended state, waiting for a phone call that would change everything. Well, that call finally came in this episode. We're going beyond the surgery doors. I want to take you into that moment when the world stops, the moment they tell you the transplant is finished and you walk into the ICU room to see your child for the first time with their new lungs. So there we were in the consultation room. The words had finally been spoken. The surgery is over. He did great. And if you remember, back in episode four and six, I mentioned a funny story about our surgical director, Doctor Heinle and how I probably made him incredibly uncomfortable. Well, that is this moment. The second he gave us the good news, my body just took over. I didn't think I just lunged and wrapped my arms around this brilliant, composed surgeon in the most awkward, desperate, overwhelming hug of my entire life. Gratitude looks really weird when you've been living in survival mode for months. And I just squeezed him. Poor doctor Heinle He took it like a champ, but I'm pretty sure he was relieved when he finally got to step out of the room. And once the door clicked shut behind him, the air in the room just broke. It was just the four of us Me, Justin, Jeff and Samantha.It was this collective, heavy release of breath that we had been holding for God knows how many months. We finished our crying. We hugged each other, wiped our tears, and started packing up our scattered things to finally go see our boy. While we were waiting to be called back, the reality of what Ryder's body had just endured was being documented. And to really understand, you have to look at the operative report from Doctor Heinle The official title of the surgery was Bilateral Sequential Lung Transplantation utilizing cardiopulmonary bypass support via bilateral incision. In plain English, they used a clamshell incision opening his chest completely across, which required them to divide the mammary pedicles bilaterally and even split his thymus to access his chest cavity. When they opened him up, they saw the true damage of the bronchiolitis obliterans. His lungs were severely hyperexpanded and his right lung had actually herniated well past its midline. Doctor Heinle noted that they actually had to flush the airway with tobramycin irrigation and clear out secretions before they could safely divide his bronchus. Now here is the actual math of this incredible miracle. He was on cardiopulmonary bypass for three hundred and thirty three minutes, three hundred and thirty three minutes. That's over five and a half hours of a machine pumping his blood, during which they cooled his body down to about eighty nine point six degrees to protect his organs. The ischemic time. This is the agonizing countdown. Ischemic time is the total amount of time. The donor organs are completely without blood flow. The clock starts the absolute second. The procuring surgeon clamps the donor's blood vessels. The lungs are immediately flushed with a cold preservative solution packed into ice saline sponges and rushed to the hospital. The notes show that the ischemic time for Ryder's donor lungs was three hundred and eighty nine minutes, which is six hours and twenty four minutes. About three hours and fifteen minutes of that was just the transit time. When flying those lungs to Texas Children's. It is a literal race against the clock to keep the tissues viable before Doctor Heinle can finish sewing the intricate connections, which included telescoping the donor bronchus into Ryder's native bronchus. He takes the clamps off and allows Ryders warm blood to finally rush into them. Now let's talk about this incredible donor. According to the medical notes, the donor was a child who stood about four foot seven inches tall and weighed roughly sixty six pounds. Ryder, on the other hand, was around four foot two and weighed closer to ninety pounds at the time of surgery. Because Ryder's sick lungs were severely hyperexpanded, the new healthy donor lungs were actually significantly smaller than the ones they took out. The notes showed that the donor child had absolutely beautiful oxygenation levels and was positive for CMV and EBV viruses, which meant Ryder's post-transplant medication plan had to be perfectly tailored to protect him. Those lungs were smaller, but they were strong and they were the perfect fit. It wasn't long before a nurse came to get us, probably less than an hour. We walked with her down those sterile, brightly lit hallways. Every step felt heavier than the last. When they finally wheeled Ryder into room L, t one seven two three oh one in the CV, ICU at five twenty three p m that evening, the room was a total sensory overload. Before I even really saw him, I heard the constant chiming of the monitors. And then there was Ryder. He was swallowed up in a sea of wires, IV poles and central lines. He had four chest tubes, two anterior and two posterior, all pulling fluid out of his chest cavity on negative twenty centimetres of suction. But you look closer. You look past the tapes and the tubes and you see his skin. You see the color in his face. Beneath the hum of all those machines. The lungs of an absolute hero were resting inside our little boy's chest. But the ICU is never quite a recovery. We barely had time to process that he was alive before the intervention started. By six thirty one p m, just over an hour after he arrived in that room, the vascular Access team was at his bedside. The red lumen on his right internal jugular central line was completely occluded. They tried manipulating it and doing a normal saline flush, but it wouldn't budge. They actually had to instill hydrochloric acid to try and dissolve the blockage. And when that didn't work, they recommended a clot buster called alteplase. The cocktail of medications that kept him stable were staggering. He had a continuous infusion of fentanyl for sedation and pain. He had heavy hitting immunosuppressants, tacro, mycophenolate, methylprednisone and an infusion of ATG. He had inhaled nitric oxide at twenty parts per million to help the blood vessels in his new lungs open up because Ryder had pre-transplant adrenal insufficiency. His body required stress dose hydrocortisone, meaning his heavy chest sutures would have to stay in for ten to fourteen days to ensure that he healed properly. And while all of this medical chaos was happening, real life didn't stop. On post-op. Day two, our amazing social worker, Miss Gloria, stopped by rounds to check on her coping, but we all made sure that that room felt like Ryder Situ wanted to come visit, as did Gunner Now, that wasn't a hospital requirement, but it was our own strict rule that Gunner wasn't allowed inside the room. We wanted to minimize Ryders exposure to any outside germs as much as possible. Instead, Gunner wore his little kid mask and sat right outside the ICU doors. The amazing Child Life team came by and gave Gunner stickers and erasable markers so he could color on the sliding glass doors into Ryders room. He would just sit there and wave at his big brother through the glass. We didn't want to bring any more germs, so we just kept visitors to an absolute bare minimum. Do you remember in a previous episode when I told you his elementary school back home sent him a care package? Well, in there was a bunch of letters and drawings from his friends back home, and we taped them all up to the ICU window. We hung wall clings of animes he loved, and we tried to celebrate Ryder so that everyone walking by would know he was doing great. We were so blessed to have friends stop by and bring us food and give us the emotional support we so desperately needed. The medical miracles just kept showing themselves on June twentieth, the very next day. Doctor Moreno came in to do a flexible bronchoscopy. At eleven forty nine a m they did the unthinkable. They pulled the tube. Ryder was extubated and placed on a high flow nasal cannula almost immediately. Our dietitian noted that he was already asking for food and drinks. That's our Ryder He just had his chest cracked open, but he was ready for a snack. But before you do that, you have to prove that you can safely swallow without aspirating into your brand new lungs. On June twenty first. Julia, our speech language pathologist did a swallow. Study Ryder was sitting upright in a swallowing chair, still requiring about ten liters of oxygen. They gave him barium coated thin liquids through a straw and even some pudding to track where the food was going. During the study, they reported that he had zero pain and he passed the test with flying colors and was officially cleared for a regular diet with thin liquids. By post-op day three June twenty second, Doctor Hayashi came to the bedside. Ryder was pre-medicated with Tylenol and codeine, and they removed both the left and right anterior chest tubes without incident. That same day, another doctor noted that they were pulling his arterial line and transitioning his heavy IV sedation off, moving him towards oral oxycodone for pain. But the most incredible part, they didn't let him just lay there by post-op. Day four. On June twenty third, Ryder was off the inhaled nitric oxide and breathing on just two litres of oxygen through a standard nasal cannula. And because he was doing so well, his physical therapist, Miss Kate, came in for a session. Think about this four days after a double lung transplant, with two posterior chest tubes still pulling fluid from his back. Ryder was sitting on the edge of the bed. Miss Kate helped him do five sit to stand repetitions, holding a static stand for fifteen to 20s at a time, while she had him count out loud to distract him from the pain. By post-op day five on June twenty fourth, the momentum was undeniable. We were dealing with some unglamorous ICU realities, like getting his nausea and pain under control after having bowel movements and initiating a medication called amlodipine to help manage some high blood pressure. But his oxygen support had dropped down to just half a litre to maybe one litre on his nasal cannula, and he was maintaining one hundred percent oxygen saturation that day. His physical therapist came in for a fifteen minute session. He still had those two posterior chest tubes hooked up to twenty centimetres of suction, but with someone holding his hand to assist him and taking two seated rest breaks along the way. Our boy walked one hundred and twenty feet. Ryders recovery sprinted forward. By June twenty fifth, he was completely weaned off all supplemental oxygen and breathing room air on his own. By June twenty eighth. The final two posterior chest tubes were removed, But before you can leave the hospital, you have to cross one final major hurdle the surveillance bronchoscopy to check for rejection. So on July second, which was post-op day thirteen, Doctor Malakoff brought Ryder back for procedure. This time he didn't need a ventilator, just a light LMA airway mask and some sedation. She noted that both the left and right anastomoses were open and intact. They cleared out a moderate amount of sloughing, and underneath the tissue was bright pink and healthy. She performed a lavage, washing the right middle lobe with saline to test the fluid, and took biopsies from his left lower lobe. Later that afternoon, the results came in. The lung biopsy was totally negative. For rejection. He tested positive for something called C4, but the team suspected it was just an artifact because he had recently received an IVIg infusion. and the most beautiful sentence in the whole chart. Doctor Malikov wrote first spirometry post lung transplant was excellent on the exact same day, July second, just thirteen days after his chest was opened. Anna, our amazing PA, spent sixty minutes with us going over our discharge education and transplant precautions. Leaving the hospital didn't mean leaving the medical world behind. It meant we were taking the pharmacy home with us. The discharge summary shows a massive shift. We officially stopped all the heavy medications that managed his end stage lung disease and goodbye, Symbicort. Goodbye, Spiriva. Goodbye, hypersaline. Instead, we had to become experts in a whole new regime. we were sent home with anti-rejection medications like tacro prednisone and Mycophenolate because his immune system was now suppressed. He needed heavy prophylactic coverage. Valcyte for viruses. Vori for fungus and bactrim to prevent pneumonia. He also went home on amlodipine for his blood pressure. Magnesium supplements because tacro depletes them. And a whole arsenal of GI meds like Pantoprazole, Miralax and Simethicone just to counteract what the other drugs were doing to his poor stomach. It was terrifying. But as we packed our bags, gathered up our hospital stuff, and walked out the hospital doors, he was breathing room air. His new lungs were bright pink and they were his. We were finally heading back to Project Joy Hope. The beyond had officially begun. Now that we were in the beyond, the normal typical wait time to go back home to Dallas was three months, and that was only if everything went smoothly from here on out. That meant we would have been in Houston for nine months total, six months waiting and three months post-transplant. Next time we'll dive into what those three months really looked like as we navigated our new baseline. This is between breaths. And I'm really glad you're here.