Serious infection damages boy’s lungs, but Stanford Medicine Children’s Health critical care doctors heal him over time
In literally one day, Jordy Gonzales Perez’s life changed. He went from playing soccer and feeling healthy to having to fight for his life.
And it all started with a simple dry cough.
“On the last day of school in third grade, he came home with a cough and a rash on his face, chest, and back. I took him to a clinic near our home in Wenatchee, Washington, and they diagnosed him with allergies and sent us home,” says his mom, Griselda Gonzalez.
Yet, it wasn’t allergies. It was something much more complicated and harder to pin down.
The next day, Jordy developed a high fever and was having trouble breathing. The family rushed him to their local hospital, where doctors discovered that his right lung had collapsed. The 9-year-old was then transported by air to a hospital in Spokane, Washington. He was in acute respiratory failure.
“I couldn’t believe it. He was my kid who was always healthy. I was really scared,” Griselda says.
In Spokane, Jordy was placed on extracorporeal membrane oxygenation (ECMO), a sophisticated machine that takes blood from the patient and oxygenates it, then pumps it back into the patient’s body. It acted as Jordy’s lungs because his were too damaged to sustain him. ECMO is the highest level of critical care support for children (and adults) with heart and lung issues.
“He was really, really sick. We were told he probably wouldn’t survive. That was really hard to hear,” Griselda says.
Jordy beat the infection, but his doctors in Spokane diagnosed him with pulmonary fibrosis, meaning that his lungs were scarred and damaged, from an unknown cause. Jordy’s local doctors recommended that he be evaluated for a lung transplant—something their hospital didn’t provide. They decided that Jordy needed to go to Stanford Medicine Children’s Health.
The ECMO team picks up Jordy and brings him to Stanford Children’s
Transporting children on ECMO from one hospital to another is rare and takes an intricate, well-coordinated effort. Only a few such transports are performed each year at Stanford Children’s, and typically only larger children’s hospitals offer ECMO.
“We only do ECMO transports when a child needs an advanced service that we offer, such as a transplant evaluation, a complex diagnostic workup, or long-term mechanical support,” says Kathleen Ryan, MD, director of ECMO Services at Stanford Medicine Children’s Health’s Betty Irene Moore Children’s Heart Center and a critical care doctor with a cardiology specialty.
ECMO transport journeys often require many legs and many patient transfers. For Jordy’s transport, three legs were spent getting the transport team on an ambulance to the airport, flying to the area airport, and riding in an ambulance to the hospital. Then, the three-step process was reversed, but this time with the patient.
“There’s a lot of maneuvering because you are moving someone who is dependent on mechanical circulatory support to stay alive. You are holding a cannula and breathing tube in place in addition to all the patient’s machinery while you move through the hospital, going over bumps to get on and off the elevator, onto the ambulance, and then onto the airplane. It’s very complex and requires a great deal of teamwork,” Dr. Ryan says.
Dr. Ryan led the critical care team that traveled to pick up Jordy, which included a Stanford Children’s critical care transport nurse, a respiratory care transport therapist, a perfusionist, and a contracted pilot and flight nurse.
Arriving at Stanford Children’s for a lung transplant evaluation
Jordy’s lungs were very damaged, and the lung transplant team determined that he would likely need a lung transplant. There are seven pediatric lung transplant programs in the United States, and Stanford Medicine Children’s Health’s is the only one on the West Coast.
Yet before Jordy underwent such a big operation, the team wanted to get him as healthy as possible. And sometimes, when children are well supported on ECMO, they may recover without needing a lung transplant in the end. While lung transplants are a wonderful life-saving procedure, donated lungs are not easy to come by, and transplanted lungs do not last a lifetime.
“We have found that if we do a good job supporting a child on ECMO over time, sometimes the lungs can eventually heal,” Dr. Ryan says.
Implementing an innovative use of ECMO to help Jordy recover
When Jordy arrived at Stanford Children’s, his ECMO cannula—the tube that carries blood to and from the body to the machine—had been placed in his neck. It’s a normal cannula placement, but it wasn’t ideal for Jordy. The tubes made it hard for him to move and basically kept him immobile in bed. Plus, he needed sedation to cope with the cannula, which sapped his energy.
“We knew that we needed to get Jordy up and moving to help his lungs improve. When patients breathe spontaneously, it’s often better for their lungs,” Dr. Ryan says.
When patients are on ECMO at Stanford Children’s, they receive care from a multispecialty team of doctors who implement a rehabilitation plan. Jordy’s team included critical care doctors, a heart surgeon, a lung transplant doctor, perfusionists, ECMO specialists, respiratory therapists, and physical and occupational therapists.
“Our ECMO Rehabilitation Program is incredible—we could not do it without everyone involved,” Dr. Ryan adds.
When an ECMO cannula is placed in the neck for lung support, it drains blood from the superior and inferior vena cavae and returns blood back to the right atrium of the heart. Yet this setup was not helping Jordy heal, so the ECMO team decided to try a new ECMO cannulation strategy.
“We put both cannulas directly into his heart. It better supported his lungs and got him up and moving,” Dr. Ryan says.
The cannula ends that connected to the ECMO machine were moved from Jordy’s neck to his abdomen, empowering Jordy to move more freely. He was able to sit up in bed and work with his occupational therapist and physical therapist to begin moving.
Getting Jordy up and about to help his lungs heal
“It was amazing to see how Jordy changed through the whole process,” says Ozzie Jahadi, the manager of Perfusion & ECMO Services at Stanford Children’s. “At first, even stepping on a footstool from his bed hurt him. We worked with him slowly to get his muscles working again. By the end, it was so great to see him walking the halls and playing cards with the nurses who were on break and had stopped by for a visit.”
Jordy was weaned from sedation, and with the added daily movement, his witty, playful personality returned. His parents took turns caring for him and caring for his siblings at home in Washington. The family video-chatted to stay in touch.
“At one point, Jordy was really sick, and he told me, ‘I don’t want to die.’ So to see him walking with his machine and doing the best he could to get better made me feel so proud,” Griselda says.
A welcome surprise after months of recovery
Jordy spent 10 months recovering and regaining strength at Stanford Children’s. While in the hospital, he celebrated his 10th birthday, Halloween, Thanksgiving, and Christmas. On his birthday, nurses decorated his hospital room during the night so he could wake up to a cheerful scene.
“We give care that goes beyond health care. It’s hope care,” Jahadi says. “To see the joy we brought to him, his family, and the staff on his birthday was really wonderful.”
Another nurse made Jordy a Robin costume for Halloween that he wore while trick-or-treating down the hallways. At Thanksgiving, one of his doctors brought a special dish to share with the family, and the care team gave him presents for Christmas.
“Jordy remembers a lot from his time in the [Packard Children’s] hospital. He doesn’t remember the hard stuff, but he remembers the nurses and doctors and the good memories he has of them,” Griselda says.
Dr. Ryan, along with her Stanford Children’s colleagues, including Carol Conrad, MD, and Vamsi Yarlagadda, MD, published an article on Jordy and their innovative ECMO cannulation strategy in the Journal of Thoracic and Cardiovascular Surgery.
“Our unique approach to Jordy’s ECMO cannulation ultimately promoted his recovery,” Dr. Ryan says. “I could not be prouder of our ECMO team. It was a big achievement, and he had a great outcome.”
After Jordy had spent 158 days on ECMO, his family received great news: He no longer needed a lung transplantation.
Getting on with life as a regular teen
Today, Jordy is 15, and his hospital stay is long in the rearview mirror. He enjoys all the things teenagers love to do, including hanging out with friends and going to school.
“Jordy is a very happy boy,” Griselda says.
He loves to kick the soccer ball with his cousins, but he can’t play on a team. Even though he no longer needs regular oxygen support, he doesn’t have the lung capacity to play a team sport. Yet he has replaced soccer with other activities that he loves, like riding his dirt bike, going camping, and reading books.
The family has stayed connected with members of his Stanford Children’s care team through the years, because many feel like family.
“I would definitely recommend Stanford Medicine Children’s Health. The nurses and doctors are really good and kind,” Griselda says. “I’m so glad to have Jordy with me, today.”
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