In his two-plus years of life, Jaxyn Reynolds has never been outside of a hospital room. He has a debilitating lung disease that has kept him under intensive care since his birth.
Born at 29 weeks, Jaxyn’s journey began. What set out to be the expected struggles of a neonatal intensive care unit stay turned into so much more. Days turned into weeks/months, and months turned into more than two —26 months to be exact.
Jaxyn’s lungs were sicker than anyone could have expected, requiring high ventilation support to breathe. This caused his lungs to develop a condition called bronchopulmonary dysplasia (sick lungs from the use of the mechanical ventilator). Jaxyn, also called Jax, was also diagnosed with Tracheobroncho Malaysia. (Floppy airway) as a result, the best chance Jaxyn had to not only survive but to grow and thrive was to place a tracheostomy. Jax had a G-tube placed at the same time for external feeds. He is 24/7 trach and ventilator dependent, meaning that the trach and ventilator breathe life into his lungs every second of every day! Jaxyn also has a genetic condition called Stos Syndrome, which is characterized by excessive overgrowth and cognitive/developmental delays, among other potential symptoms.
“We spent much of our journey fighting what felt like a losing battle. Medically, Jax has scared me more times in his life than I ever thought possible. At the same time, he has fought so incredibly hard, and that hard work has paid off! After over two years, my son finally gets to come home! For the first time in two years,” Kim Reynolds, Jaxyn’s mother, told Webb Weekly. “I will have both of my beautiful children sleeping under the same roof. For the first time ever, my daughter will be allowed to play with her brother outside of a medical establishment! I am overwhelmed with emotions. Excitement as we have fought so hard for this day to come. I’m nervous because, at the end of the day, no matter how prepared you are, trach life is 100 percent terrifying! Anxious to see what our new normal looks like at home.”
She continued, “Thankfully, Bayada Home Health Care has stood by our side as we navigate this journey. They have gone above and beyond to ensure we feel supported! Knowing that I will have their help at home with home nurses (LPN or RN) and their support while we take the final steps to close this chapter gives me so much peace! This journey has been long and exhausting, but it has also changed my life for the better.
“Throughout this journey, I have met and gotten to know some incredible people. These people have become like family and furthermore a huge part of our village. Bayada is one such company that I would consider part of our village. They believe in us and support us every step of the way! They have the same goal that I do: ‘to bring Jaxyn home!’ While Bayada has provided me with some pretty incredible home nurses, there is still availability for hours to be filled! Home nursing is a requirement for bringing my sweet boy home. To watch my son go from this fragile, critical baby to this happy, sweet boy who loves “Bluey,” peek-a-boo, and his favorite books have been such a blessing! To see what this next year holds for Jaxyn and our family is beyond exciting.”
Jonah Millinken is the director of Bayada Home Health Care locally, and he talked about what Bayada was doing to help meet Jaxyn and his family’s needs.
“When we at the Bayada Home Health Care office in Williamsport received a call from our Children’s Hospital of Philadelphia transitional care manager, Susie, regarding Jaxyn, a two-year-old boy with Sotos syndrome who has never been home — he has either been hospitalized or in a long-term care facility — and who is hospitalized at CHOP after breaking his femur from an incident at this long term care facility, we knew we wanted to do whatever it took to get this kid home.
“The reality is that to bring Jaxyn home, we need to recruit a team of nurses to provide near 24/7 care for Jaxyn,” stated Milliken. “I’m happy to report that currently we have recruited some nurses for this case — some nurses saw Jaxyn’s story online and were, like us in the Bayada office, immediately driven to want to help get him home. We still need more help on his case — and the reality, too, is that we have other clients, existing kids and adults whom we provide services to, and other kids like Jaxyn who are stuck at the hospital waiting for their homecare guardian angels to help get them home.”
He added, “Here’s the homecare perspective: At Bayada, our core mission is to ensure that children like Jaxyn receive the compassionate care they need and deserve within the comfort of their own homes. The prolonged hospitalization of Jaxyn, spanning over two years, mirrors an all-too-common plight faced by many children in our local communities and countless children and their families nationwide. This scenario, though hard to fathom for those outside the immediate realm of healthcare or personal experience, underscores a critical issue: a nationwide caregiver and nursing shortage that severely limits our ability to meet the escalating healthcare needs of kids like Jaxyn and other people in our community.”
“Homecare nurses wield an incredibly profound influence on the lives of their clients and the families they support. Those who choose to work with children like Jaxyn don’t just provide care; they gift something ineffable—through dedicated, one-on-one, compassionate care, they essentially offer their clients a renewed lease on life. Bringing children like Jaxyn home from prolonged hospitalization does more than just reunite families; it reintroduces them to a semblance of normalcy and joy that has been absent for far too long (how lucky are those of us who take for granted the ability to see our loved ones, healthy, and at home every day?). God bless nurses and caregivers everywhere—but the nurses who are called to work in pediatric home care have a special place in my heart and the hearts of those they work with.”
Jaxyn has a long road ahead, but that road is filled with love and support for him, helping him attain the life of a normal youngster.
