Josh, Pacing Since 2009

Josh’s mother noticed that he was struggling to stay awake. After suffering full respiratory arrest, numerous tests were performed to identify the cause, finally resulting in a diagnosis of ROHHAD (Rapid-Onset Obesity with Hypothalamic Dysfunction). Three days before his 9th birthday, Josh had a surgery to insert a tracheostomy tube, so he could connect to a ventilator to breathe for him. At first, doctors thought he might only need it when he slept. But more in-depth testing a year later showed he was ventilator dependent 24 hours a day.

Everywhere Josh went, he had to lug along his ventilator. He even had to use that ventilator to breathe for him on his plane ride home from the Chicago hospital where he went for his testing.

After months of testing, doctors decided to implant the Avery Diaphragm Pacing System in the summer of 2009, just before Josh turned 13 years old. About a month later, after he’d healed adequately from pacer surgery, Josh began using the diaphragm pacing systems for just a short time each day at first and build up to spending hours per day on the pacers and off the ventilator. For several years now, Josh has used his diaphragm pacing system during all his waking hours.

He has so many hobbies and interests that are so much easier to enjoy with the help of his diaphragm pacing systems. One of his new dreams is to become a chef. Josh’s mom says “We are so very glad to still have him with us. We know each day is a gift.”

Josh’s mom says, “We don’t even want to imagine life without the pacers. Josh has so much more freedom with them. He bowls, goes mini golfing, fishes, competes in special Olympic events and much more.”

Source: ABD-PP-042, Rev A 06/2021

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Is Avery for Me?

The Avery System is indicated for adult and pediatric patients who would otherwise be dependent on mechanical ventilation. Intact or repaired phrenic nerves and functional lungs and diaphragm muscles are necessary for the device to work properly. 

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