“They make it possible for him to do more than ever before!”
Sam’s journey with a feeding tube began nearly seven years ago. We’d been referred to a pediatric GI for the first time, due to issues such as vomiting, recurrent bouts of aspiration pneumonia, neck and stomach pain as well as reflux that wasn’t responding to treatment. He’d been diagnosed withFailure to Thrive (FTT) for close to a year at this point, and a recent swallow test showed aspiration and penetration that was severe enough to warrant him going to honey consistency liquids and pureed solids. In other words, we were really struggling.
The first thing our GI ordered was an EGD with biopsies to see if he could determine the reason behind the problems Sam was having. He also mentioned the possibility of a feeding tube for the first time…
Hearing the words “feeding tube” associated with my child led me to feel like I had failed him, that I hadn’t tried hard enough to get him to eat and that there was something I could or should be doing differently. Our pediatrician helped us to realize that feeding tubes were more common than we realized, and that we needed to focus on doing what was required in order to get him well.
He had a PEG tube inserted within a matter of weeks. Prior to the procedure, and 2nd round of biopsies, we’d been planning on using the feeding tube for running night feeds that would supplement the food he was getting by mouth. However, after getting confirmation that he really did still have markedly severe eosinophilic build up in his esophagus, our plans changed dramatically. Sam was put onto an elemental diet with everything going in through his tube and nothing at all by mouth. We weren’t expecting this at all and really struggled over the next couple of months as we worked to adjust our lives around tube feeds, and did our best to help our child accept that he could no longer eat or drink anything other than water.
“Having a feeding tube and being dependent on continuous feeds hasn’t slowed him down at all.”
It took quite a while, but Sam finally started to realize how much better he was feeling once he was off of all foods and dependent on formulas. Once his peg tube was exchanged for an AMT MiniONE low profile button, he really began to gain weight and achieve developmental milestones that had seemed impossible before. We were very happy to see color in his face and a sparkle in his eyes. He was looking less fragile and sick all the time. There are several other reasons that he continues to have a g-tube and ended up having a primary j-tube placed as well, however the MiniONE line has substantially changed our lives for the better!
Due to sensory issues and the fear Sam had of having anything sticking out of his tummy, we continued to only use the low profile AMT buttons. The MiniONE® is smaller and softer than the other brands we’ve tried. It has a lower profile, easier to hide if need be, and takes up much less room inside his stomach!
Having a feeding tube and being dependent on continuous feeds hasn’t slowed him down at all. He’s as active as any other child, tube fed or not, and loves to ride his bike, play in the sand at the beach, climb trees and run as much as his little body will let him. While tube changes can still be scary at times, he’s learned to find ways to make them less scary by either wearing a disguise or attempting to pull a prank on one of the doctors or hospital staff. His favorite advice is that sometimes you just have to try as hard as you can and never give up. It’s this determination that’s allowed him to come as far as he has.