Ryder and his mom, Courtney, got back from his first trip to Disneyland. While that might seem like a typical highlight of a typical childhood, Ryder\u2019s path to the happiest place on earth was not an easy one. <\/p>\n\n\n\n
Ryder, now 10, seemed like a healthy, robust baby. A bout of RSV (a common respiratory infection that can be life-threatening to babies) in infancy landed him in Children\u2019s Health\u2120 Plano hospital for a few days. But other than being susceptible to respiratory viruses, Ryder seemed to bounce back just fine.<\/p>\n\n\n\n
Then another bout with RSV at 16 months was a different story.<\/p>\n\n\n\n
\u201cHis daycare called me at work and said \u2018There\u2019s something really wrong. He\u2019s lethargic and just not himself\u2019,\u201d Courtney said.<\/p>\n\n\n\n
At first, she and Ryder\u2019s dad, Jeff, weren\u2019t too concerned. After all, things had always turned out OK when they had taken their little boy to Children\u2019s Health Plano in the past. This time, however, Ryder\u2019s vital signs suddenly plummeted. His hospital room filled up with doctors and someone told Courtney she needed to wait outside. That\u2019s when Jeff realized this wasn\u2019t a normal visit.<\/p>\n\n\n\n
The medical team inserted a tube so Ryder could breathe and told the family to get ready to be transported to the pediatric intensive care unit (ICU) at Children\u2019s Health Dallas where Ryder could get the care he needed.<\/p>\n\n\n\n
\u201cIt was so urgent they considered a CareFlight from Plano to Dallas, but the ambulance showed up first,\u201d Courtney recalled.<\/p>\n\n\n\n
Things were stagnant that first week in the ICU \u2013 Ryder wasn\u2019t responding to the typical treatments that might clear his lungs and help him breathe on his own. After trying a variety of treatments in the first few days, Ryder\u2019s care team suggested something unusual: Sevoflurane. A medication typically used by anesthesiologists to put kids into a sleep-like state before surgery, sevoflurane also causes the large airways in the lungs to open and can make it easier to breathe.<\/p>\n\n\n\n
The treatment was his last chance, but at the time, it hadn\u2019t been used often in instances such as Ryder\u2019s and not typically on a child as small as him.<\/p>\n\n\n\n
\u201cDespite everything, I felt a lot of hope,\u201d Courtney said. \u201cThere was hope that he was going to be OK. Hope that it was going to work. And it was nice to hear from attendings, residents and nurses that they felt hopeful, too.\u201d<\/p>\n\n\n\n
A team of providers monitored Ryder \u2013 and the machine administering the sevoflurane \u2013 around the clock. Four long days later, he finally started to breathe on his own and the ICU team was able to remove the breathing tube.<\/p>\n\n\n\n
But the extreme treatment had taken its toll. Initially, Ryder couldn\u2019t talk or move on his own, and he wasn\u2019t quite conscious. The neurologist who examined him told Courtney and Jeff she\u2019d be back the next day and gently warned them that their little boy might never be the same.<\/p>\n\n\n\n
\u201cI told the doctors that I wasn\u2019t leaving without the same kid that I came in with,\u201d Courtney said.<\/p>\n\n\n\n
By the time the neurologist returned 24 hours later, things had started to change.<\/p>\n\n\n\n
\u201cShe did the knee reflexology test and Ryder\u2019s leg moved,\u201d Jeff said. \u201cI don\u2019t remember her name, but I do remember how excited she was. And that she had a little tear in the corner of her eye.\u201d<\/p>\n\n\n\n
Ryder continued to improve in the ICU at Children\u2019s Health Dallas for a few days and then spent nearly a month at a nearby rehabilitation hospital for children where he recovered his strength and learned to walk and talk again.<\/p>\n\n\n\n
\u201cYou could see how determined Ryder was to get better. And all the nurses and therapists made the experience fun,\u201d Courtney said. \u201cIt was a heartwarming experience.\u201d<\/p>\n\n\n\n
Ryder, now in fourth grade, continues his amazing recovery. Outgoing, engaging and a bit of a rule-follower, he is an A-student who loves animals, superheroes and Anime (OnePiece). He also has a lot of friends.<\/p>\n\n\n\n
\u201cEverybody at school knows him and people just like to be around him,\u201d Jeff said. \u201cHe used to call himself the king of Kindergarten when he was there.\u201d<\/p>\n\n\n\n
But his life-threatening lung infection \u2013 and the intensity of the treatments that saved him \u2013 are a constant presence in his life.<\/p>\n\n\n\n
Today, Ryder lives with a rare, irreversible lung disease known as post infectious bronchiolitis obliterans (PIBO), which means that the small airways (bronchioles) in his lungs are inflamed and narrowed. PIBO can develop in young children after a severe lower respiratory tract infection and causes persistent coughing, wheezing and build-up of mucus in the lungs, symptoms that are similar to what people with cystic fibrosis endure. A common cold can land him in the hospital for weeks. <\/p>\n\n\n\n
Luckily, Ryder has a team of specialists in pulmonology, endocrinology, hematology and neurology at Children\u2019s Health, who collaborate as a team to provide him holistic care. He also gets regular lung therapy to build his lung capacity and immunoglobulin injections twice each month to improve his immunity against infections.<\/p>\n\n\n\n
Children\u2019s Health is committed to providing the best, most comprehensive pediatric healthcare for all children and families in North Texas and beyond. As evidenced by Ryder\u2019s triumphant medical journey, having access to top-notch care in a multitude of specialties under one roof is crucial for many of our patients to thrive.<\/p>\n\n\n\n
Ryder\u2019s parents are partners in his care and their diligence is helping him live his best possible life. This means keeping tabs on four inhalers, several different daily medications, two nebulizer treatments and twice daily chest physical therapy sessions with a CPT vest. This inflatable vest attaches to a machine that vibrates it at a high frequency and loosens the mucus in Ryder\u2019s lungs.<\/p>\n\n\n\n
It also means holding the line on wearing masks in public \u2013 even while at Disneyland. Ryder also wears his to school, and his best friend wears one, too, in solidarity.<\/p>\n\n\n\n
\u201cThey are probably the only two at school who still do,\u201d Courtney said. \u201cBut a cold could land Ryder in the hospital and \u2026\u201d<\/p>\n\n\n\n
\u201cAnd that\u2019s scary for my mom,\u201d Ryder said, finishing her thought.<\/p>\n\n\n\n
Against the odds, Ryder perseveres and wants to be like the rest of his peers. He plays video games like Minecraft or Roblox online with his friends, and his dad organized a small fantasy football league. But he\u2019d like to play more sports and hopes to start basketball soon.<\/p>\n\n\n\n
\u201cI want to keep up with my friends. But they walk fast and it\u2019s not humanly possible for me,\u201d he said. \u201cThey try to slow down. But I\u2019d rather keep up.\u201d<\/p>\n\n\n\n
2023 has not kind to Ryder. He had multiple bacterial viruses in his lungs that sent us on a quick downward spiral. His reserves diminishing with each virus. Multiple extended stays at the hospital. To the point his pulmonologist brought up the idea of a lung transplant. Which initially is extremely scary, because of how severe the surgery is. Then we got excited about the thought of not having the four oxygen machines we have, the countless nebulizers and multiple chest physical therapy machines or all the medicine Ryder has to take daily. Still so much to process after managing Ryders chronic lung disease for his life. Then we accepted the referral to be evaluated in Houston at Texas Children\u2019s for the possibility of a lung transplant in September. Only to find out that Ryder had a bacterial infection again, while on that trip. To tell you it\u2019s exhausting to spend multiple weeks at a time to combat these viruses is a severe understatement. Ryder has been a trooper through all of this, all these years. But nineteen evaluations\/tests\/reviews in a week is never what a kid wants to do. He does it with a smile and keeps his positive attitude moving forward. Because of a variety of reasons, we weren\u2019t able to get an answer about Ryder getting on the transplant list till late November. The decision was delayed because Ryder having 3-4 lung diseases, yet again was sick. He had come down with adenovirus and respiratory syncytial virus infection. He spent another 2 weeks fighting that. Once that hospitalization was over the staff at Children\u2019s Health Dallas said that Ryder should wear oxygen when ever exerting effort. Yes, that means walking around the house.<\/p>\n\n\n\n
Right before Thanksgiving Courtney got the call, Ryder was approved to be on the list. To be formally on the list he has to be in Houston within an hour of the hospital. So, January 1, Ryder and Jeff will make the trip to Houston. To be officially on the list. Ryder will have to live in Houston for up to two years. Mom will move in to a rental till rehab is complete. For this, between waiting time for a set of donor lungs and ample recovery time post-transplant. Then numerous trips each year, to have checkups on his lungs. With that being said, we have insurance, and it will cover a lot of the costs. But it won\u2019t cover all. As you can imagine, owning a house in Dallas and renting in Houston will be expensive, the numerous trips back and forth. On top of physical therapy, new medications etc.<\/p>\n\n\n\n
So, if you love our son as much as we love our son, please consider donating to COTA for Ryders Lungs so COTA can assist with a lifetime of transplant-related expenses. Ryder is an amazing young man and deserves to be able to walk into the store with his family.<\/p>\n\n\n\n
Love<\/p>\n\n\n\n
Courtney (Mom) Justin (stepdad)
Jeff (Dad) Samantha (stepmom)<\/p>\n\n\n\n
DIAGNOSIS:<\/strong> post-infectious bronchiolitis obliterans (PIBO), bronchiectasis, and Swyer-James-MacLeod syndrome<\/p>\n\n\n\n The Children\u2019s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation\u2019s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n","protected":false},"excerpt":{"rendered":" Ryder and his mom, Courtney, got back from his first trip to Disneyland. While that might seem like a typical highlight of a typical childhood, Ryder\u2019s path to the happiest place on earth was not an easy one. Ryder, now 10, seemed like a healthy, robust baby. A bout of RSV (a common respiratory […]<\/p>\n","protected":false},"author":2,"featured_media":54,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\n