Tonight, our hearts feel shattered. Our brave little boy, Jax, faced a severe episode of desaturation—his oxygen levels plummeted, and no matter what the doctors did, he just couldn’t recover. Even on 100% oxygen and six liters of support, his body faltered. In an instant, the room that had been filled with laughter and playful peekaboo games turned into chaos. He was rushed from the floor back to the ICU, where the team immediately maxed out high-flow oxygen. The next possible step, should this not stabilize him, would be BiPAP—a level of support none of us ever want to see our child needing.
As if that wasn’t terrifying enough, tremors began to shake his tiny body. The medical team quickly started a 24-hour EEG to rule out seizures. His discomfort and fear were so overwhelming that sedation became necessary to help him remain calm while the tests were performed. Minute after minute, they ran one test after another, searching for answers. Yet for now, we are left in limbo—questions flooding in where certainty should be, hope tangled with fear, and hearts aching for clarity.
What makes it even harder to process is how swiftly everything changed. Just moments before the episode, Jax was radiant, smiling so big, melting hearts like he always does. He was playful, seeking attention, laughing at simple games, and wrapping everyone around him in joy. We joked that he just wanted all the nurses around because he loved the attention, reveling in his little world of fun and connection. And then, in what felt like the blink of an eye, the smiles disappeared. Joy turned into panic. Laughter gave way to alarms. Our happy, playful boy became a child fighting to keep his body stable, hooked up to machines, and sedated to endure the tests that might offer answers.
There are no words that can truly convey the heartbreak of witnessing your child transition from vibrant life and laughter to vulnerability and uncertainty in moments. Each parent’s worst fear was happening before our eyes, and yet, even in the chaos, we are reminded of the incredible resilience Jax has shown through every challenge he has faced.
We are holding on to hope, desperate for guidance, strength, and a miracle. We need answers that explain why this happened so suddenly, solutions that can keep him safe, and the courage to endure alongside him. But in the midst of the medical machines, the alarms, and the sedatives, one thing is clear: Jax is not just a patient—he is our son, our joy, and our inspiration. Even in this storm, he continues to teach us about the fragility and preciousness of life, and the fierce love that binds a family.
We are so grateful to the medical team, tirelessly working to stabilize him, to run the tests, and to ensure every step is taken for his care. And we are eternally thankful to all of you who continue to walk this difficult road with us. Every prayer, every thought, every message of support—each one is a lifeline, a thread of hope that reminds us we are not alone in this fight.
Tonight is a night of heartbreak, uncertainty, and fear. But it is also a night of love, resilience, and community. We ask that you lift Jax up in whatever way you can—through prayer, positive energy, or quiet hope. Our little boy has already faced so much with courage, and with the support surrounding him, we hold onto the belief that he will face this moment with the same strength.
Even in the darkness, we cling to the possibility of light. Jax’s story is far from over. The smile that moments ago lit up a room will return. The laughter, the games, the joy—these are not gone forever. Tonight, we hold him in our hearts, and in the hearts of everyone who loves him, as we wait for answers, healing, and miracles.
