Yesterday, Raedyn decided to wake up and stir up chaos in a way I never expected. It had been a tough few weeks, but Raedyn had finally started to show signs of improvement. His energy had returned, and though the nights were still hard with coughing, the days were getting better. I was cautiously hopeful that we had turned a corner.
But, as we all know, things can change in an instant. Yesterday morning, after a sleepless night, I noticed that Raedyn seemed different. He woke up with a lot of extra trach secretions, and I could hear a rattling in his chest. We immediately started his morning treatments, and for a brief moment, I thought we were in an okay place. However, just 30 minutes later, everything changed.
Raedyn laid on the floor, completely drained of energy, and started to fall asleep. Then, out of nowhere, his color began to fade, and his skin turned purple. Panic set in as I swapped out his trach, thinking maybe it had become plugged. He looked better for a short while, but soon, he never fully recovered.
He stayed pale, and I could see his work of breathing increasing. His chest was sinking in with every breath, and he was now struggling to breathe in a way I had never seen before. Within an hour, Raedyn was completely unaware of his surroundings, and his entire chest was caving in as his body tried to compensate for the lack of oxygen. His breathing became shallow and erratic, and despite my best efforts to calm him, he wouldn’t settle down.
In that moment, as his breathing worsened and my fear grew, I made the decision to take him to the nearest emergency room. Though it wasn’t a pediatric hospital, I needed someone to lay eyes on him quickly. The urgency I felt in that moment was overwhelming, but I knew I had to act fast.
When we arrived at the ER, Raedyn was still extremely lethargic. His heart rate was alarmingly elevated, racing in the 170s, and his respiratory rate was dangerously high, ranging from 60-70 breaths per minute. The emergency room staff didn’t hesitate. They immediately called for the Life Flight Team, a sign that they knew the situation was critical. While waiting for the transfer team, Raedyn’s oxygen levels began to drop into the 80s, but thankfully, he remained stable enough for the flight.
The medical team in the ER was nothing short of amazing. They quickly took action, performing a chest X-ray, which revealed that Raedyn had developed pneumonia in his right lung. They also accessed his port to begin fluids and administer antibiotics right away. As a parent, seeing my son in this state was terrifying, but the medical team’s swift response gave me a glimmer of hope.
Once the Life Flight Team arrived, they were incredibly professional and supportive, allowing me to accompany Raedyn as he was transferred to the children’s hospital. During the transfer, his oxygen levels continued to dip, but he stabilized as they worked to manage his care.
Upon arrival at the hospital, Raedyn was thoroughly examined. Blood work, a trach aspirate, and a full respiratory panel were done, and the results confirmed that in addition to pneumonia, Raedyn also had a Rhino/Entero Virus. Both conditions, while concerning, are expected to resolve over time with the proper treatment. He is still on steroids from his recent battle with COVID, and those will continue for a few more days to help with the inflammation. We are also adjusting his airway clearance to assist with his recovery.
It’s been an incredibly long 24 hours, and the exhaustion is starting to set in. But through it all, there’s one thing I know: I’m not alone in this fight. The team of doctors, nurses, and specialists who have rallied around Raedyn have been nothing short of amazing. Their expertise, quick actions, and constant care have been a lifeline for both him and me.
As a mother, there are moments when you feel completely powerless, but there’s also a fierce determination that kicks in. I know that Raedyn’s strength, combined with the support we’re receiving, will help him get through this. We’re not through it yet, but we are fighting with everything we have.
Raedyn’s health is fragile, and there are still many hurdles ahead, but with the right care, time, and support, I believe he will make it through this. For now, all we can do is stay by his side, support him in every way possible, and take it one day at a time.
Thank you to everyone who has kept Raedyn in their thoughts and prayers during this time. Your love and support mean more than words can express. We’re hopeful that with the right care and time, Raedyn will be back to himself soon. Please continue to send your positive energy and thoughts his way—he needs them now more than ever.