Welcome Home Gavin: Transitioning From Hospital to Home

On July 23rd, 2026, Gavin was discharged from The Mount Sinai Hospital in NYC to continue his recovery in his childhood home in Doylestown, Pennsylvania.

It’s now been almost a month since the transition home, and we wanted to share some headlines:

Wins

• To start, passing his swallow test in July was a HUGE win. He was able to start eating certain foods by mouth and his sweet tastebuds fired up pretty quickly. Anything savory, however, still didn’t taste familiar. After lots of experimenting with different flavors and consistencies, Gavin’s tastebuds have been slowly but surely reactivating. While he still receives feedings through his PEG tube, his appetite is growing and he's working towards nourishing his body on his own.

  • Current favorite foods: Oatmeal with extra cinnamon, yogurt, and pancakes.

  • Most innovative meal: Cheesesteak insides with scrambled eggs.

• The freedom to go outside and live a less monitored life has been a huge win. No hospital bells—but he does have his own cowbell to ring if he needs anything.

• Technology has become another source of independence. Gavin has gotten more comfortable using his devices, allowing him to facetime and text whoever he wants.

  • While he’s still adjusting, it’s been helping with his dexterity in his right hand, as well as his reading and writing comprehension.

Challenges

• The transition from 5 hours of therapy a day, 5 days a week, to a handful of 30-minute in-home sessions has been an adjustment. While every staff member from Penn Medicine has been amazing, it can be frustrating to notice the progress slow down, even though it continues.

  • As his family and caregivers, we try to challenge Gavin with speech and OT exercises, but we’re all missing the aggressive PT component that helped get him on his feet so quickly before.

  • As we transition to outpatient therapy at Moss Rehab, there’s unfortunately a gap in the timeline where we have to wait for Moss but can’t continue with Penn in the meantime. It’s been a frustrating part of the system.

• Gavin remains reliant on his wheelchair, and the layout of the house means Gavin’s living space is on the ground level in the “basement,” while the rest of the family’s living quarters are up a flight of stairs.

  • Chair lift conversations have been in the mix, but for now, we wheel him around the backyard and up a slanted path to reach the back porch/living area—three stairs instead of a whole flight.

    

• And it would be amiss not to acknowledge the challenges that come with transitioning from constant hospital care to being the primary caregivers, with little to no experience.. We’ve had to workshop our schedules, adjust as we learn what works (and what definitely doesn’t), and find a rhythm that works for both Gavin and the rest of the family.

  • Transitions from to and from the wheelchair are getting smoother—mostly for Gavin, but we’re getting better at them, too.

  • Medications and feedings are becoming easier as we get more comfortable with the routine.

  • We’re finding our rhythm as a family. It’s not always perfect, and tensions can run high at times, but we’re learning how to navigate this new normal together.

    
    

Gavin’s 25th birthday is coming up this week, and I think we can all confidently wish for the same thing: that his progress, strength, and determination continue to grow, and that he keeps taking strides toward healing and getting stronger.