Gastrostomy Tube

Back in 2007, when Zane was still an infant, he had a gastrostomy tube surgically placed in his belly. For a short time after birth, he did quite well with oral feedings. Then seizures hit, and his interest in eating totally waned.

G-tube feedings make life interesting. Zane is on a regimented schedule: three bolus (or short, one-hour feedings) throughout the day; one long continuous feed at night. It makes scheduling appointments or making plans a challenge. We have to coordinate life around his time to eat. Luckily, we’ve managed to be pretty innovative over the years. Instead of always using a pump to feed him (this option allows us to walk away and do other things while Zane eats), we take syringes with us and feed him through his tube in all sorts of settings:

Hikes

Car rides
School
Restaurants
Stores
Even the zoo and Disney World

We’ve learned to ignore the stares, which usually only happen outside our little community. Usually people are simply curious, and we’re okay with that.

Sometimes, the balloon of the button (which is inside Zane’s stomach) will burst. We then have to replace it promptly. At first, we were completely grossed out. Now, it is second nature to place this button with its stem into a hole in Zane’s belly.