Onyx’s MiniONE® Balloon Button
“Onyx is excited about his ‘button’. He likes that he doesn’t have a tube taped to his face anymore.”
Onyx’s Mom
I’m Onyx’s mother, and I would like to share our feeding tube journey.
Onyx is a 4-year-old little boy with Autism Spectrum Disorder, Short Bowel Syndrome, and Post-Traumatic Stress Disorder (PTSD). Onyx caught three viral infections — which also led to croup — and he had to be hospitalized for dehydration. He had a severe sore throat, and that caused him to stop eating. We all thought that it would pass… but it did not. His hospital admission was traumatic, leading to his PTSD diagnosis, and he never resumed eating. Onyx lived with a nasogastric (NG) tube for several months.
At first, the feeding intolerance was only expected to last about a month. His doctors were sure he’d “snap out of it”, but my mama instincts knew that this wasn’t something that he’d just move past. I began advocating for a gastrostomy tube (G-tube) shortly after the NG tube placement.
We had to wait months, but his MiniONE® Balloon Button G Tube was finally placed. It is still new, and he is still recovering from surgery — so life has not gone back to “normal” yet. However, Onyx is excited about his “button”. He likes that he doesn’t have a tube taped to his face anymore. We are hoping now that the tube is not down his throat anymore, that he will begin eating again. He’s taking a little by mouth already (mostly cookies and other snacks), but we are hopeful that with time he will continue to improve.
Before Onyx’s NG tube, it was a struggle to get him to take medications. I’d have to hold him down and fight him, only to have the meds spit out at me. With the feeding tubes, I’m able to get him his daily meds with ease! His providers and I agree that even if he begins to eat normally again, we may leave the tube in for medication purposes. He also gets excited about taking meds now. He often will point out what color they are and push the syringe.