Episode 23: Julien’s Story, From Crisis to Comeback
When the phone rings during a school day, every parent’s heart skips a beat. For Jen, that call marked the beginning of a harrowing journey—one that would test her family’s resilience, the limits of medical science, and the power of community. In this episode of Rarely Familiar, we dive deep into Julian’s story: a sudden medical emergency, a whirlwind hospital stay, and the long, uncertain road to recovery.
A Day That Changed Everything
It started like any other Monday, but quickly spiraled into crisis. Julian, a vibrant teenager with a rare genetic condition, was suddenly unresponsive at school. Jen rushed to his side, only to find him unable to move or communicate. The next hours were a blur—speeding to Children’s Minnesota hospital, a flurry of doctors and nurses, and the terrifying realization that no one knew exactly what was wrong.
Julian’s condition deteriorated rapidly. He suffered paralysis, seizures, and brain swelling. The medical team consulted experts across the globe, but answers were elusive. As days passed in the PICU, Jen and her family faced the unthinkable: emergency brain surgery to save Julian’s life.
The Long Road to Recovery
After a successful craniectomy, Julian’s journey was far from over. He spent months in rehab at Gillette Children’s, relearning how to walk and reclaiming his independence. The family navigated the complexities of FMLA, short-term disability, and the emotional toll of crisis. Through it all, they discovered the importance of self-care, documentation, and clear communication with medical teams.
Julian’s story is one of hope. Against the odds, he walked out of the hospital three months later—smiling, laughing, and ready to embrace life again.
TIPS for Hospital Stays/Caregivers:
CaringBridge Website to post updates and share CaringBridge links on social media. Direct friends and distant family to post comments there and hold on texting so that text messages can be utilized for crisis management. Julian’s CaringBridge as an example.
Utilize pictures to showcase your child. A picture is worth a thousand words, by creating a photo board it shows your child’s baseline and humanizes them.
Practice saying “yes” to those offering you help (watering your plants while you’re away, bringing you dinner, cleaning at your house)
Seizure Action Plan: Be explicit with school or anyone who is caring for your child about their Seizure Action Plan and usage of seizure rescue medicine protocol. Advise to call 911 immediately then contact the parent; atypical presentations still warrant an action. Call 911 early if something is clearly off or atypical for your child.
Notetaking: Buy a big notebook for the hospital and leave it in the room to jot down notes, ideas, questions, and can act as a resource during a period when sleep deprivation does not help with remembering what the doctors/therapists discussed with you.
Ronald McDonald House is there for a reason––use it! Inpatient Resources: Meals both sit-down and on-the-go, rooms, other amenities, if available at your location.
Protect your job and income (U.S.)
Tell your manager early (“My child is inpatient; I will be unavailable. I’ll share a contact for urgent needs.”)
Use PTO first, then FMLA (up to 12 weeks of job protection)
Short-term disability (through employer or state, if applicable) may cover a portion of your income when your own health/mental health makes work impossible during the crisis. A brief note from a clinician can help.