Home Bound and Down

Zayden faced a challenging week, marked by another hospitalization.

Thursday morning, as we were dressing Zayden and preparing for his appointment at the St. Petersburg vent clinic with his Pulmonology team, he suddenly vomited and went into full cardiac and respiratory arrest. His favorite daytime nurse quickly gathered essential supplies and called 911, explaining the emergency to ensure help was on the way. Meanwhile, I began performing CPR. Within minutes, Desoto County law enforcement arrived, followed closely by the Desoto County EMS team. Thankfully, Zayden responded before needing an AED shock or cardiac medications. He was initially taken to Galiano Children's Hospital and then airlifted to Johns Hopkins All Children's Hospital for further testing and observation.

After spending two days under observation, Zayden was discharged. Doctors identified the episode as a BRUE (Brief Resolved Unexplained Event), potentially caused by reflux, aspiration, or a combination of both, possibly involving vagal nerve stimulation. While frustrating, the neurologist recommended stopping all oral feedings to minimize the risk of similar events. This was especially difficult because Zayden had recently been making progress with swallowing. However, we’re fully committed to these changes if it helps prevent another event like this.

During his hospital stay, Zayden received additional diagnoses. Tests revealed a resistant bacterial UTI, which required specialized sensitivity testing to identify the right antibiotic. The morning after his discharge, the hospital called to inform us of another infection—this time in his lungs—which could lead to pneumonia if untreated. An additional antibiotic was prescribed. Upon speaking with the pharmacist, I learned this type of infection is common among individuals with trachs and vents, which helped ease some of my anxiety.

Today, however, brought some much-needed good news. At Zayden's follow-up appointment with his ENT, we were relieved to learn that he won’t need tubes in his ears at this time. After so many challenges, it was a comfort to finally receive some positive updates.