“I am fully convinced that he is here today solely because of his feeding tube. It saved his life.”
We are a very busy family of four! I am an LPC-Intern for the Paluxy River Children’s Advacacy Center in Granbury, TX. My husband, Adam, works at Morrison Supply Company in Fort Worth. Eli just turned six years old and is in Kindergarten. He is such a smart, loving little boy! He LOVES dinosaurs and construction vehicles. He is always full of information and little tidbits about dinos and always gets excited when we drive by a construction site and he sees the equipment moving and working. He says he wants to be a doctor when he grows up. He sees about ten different specialists for a variety of other medical issues, so hospitals and doctors have been a big part of his life the past four and a half years. Despite it all, he is still so full of joy and energy! Eli also loves playing sports. That is one thing we never thought he would be able to do. I’m still very nervous (he is my baby boy, after all), but he loves to be with his teammates and friends, running around and playing! Ella is our youngest, she will be two at the end of March. Her nickname is Hurricane Ella. When she was a day old, a nurse from the newborn nursery at the hospital said, “Ya, she’s aggressive.” Ella is a little ball of energy. She actually pulled Eli’s feeding tube out one day while we were all playing together. That was the first time Adam and I had to replace Eli’s button at home.
Eli was diagnosed in July 2012 with Eosinophilic Esophagitis, but he got his feeding tube in March 2011. He also developed major oral aversions from this disease. I always describe it as PTSD with food. For the longest time, we didn’t know that food was hurting him so much, so we continued trying to get him to eat, not knowing the damage it was doing. Now he is terrified of most food (plus he has a very limited diet due to the disease), so the majority of his nutrition is through his feeding tube.
We have used various brands of feeding tubes including the Mic-Key® before switching to the AMT MiniONE® Balloon Button. The other brands seemed so big on Eli’s little body. Even with a shirt on, you could see the big bump on his stomach. We were always so fearful that he would catch it on something and pull it out. The AMT MiniONE® is so much more low-profile. It’s hardly noticeable under clothes and doesn’t “get in the way” like others did. One of the major differences we noticed after switching to the MiniONE®, was other G-tube button feeding connectors just pushed into the device, they did not lock in, which became a problem for 10-hour overnight feeds. We love how the MiniONE® feed set lock into the button. It’s secure and we don’t have to worry about “feeding the bed” instead of Eli!
The three months before Eli got his button, Adam and I were a wreck. Eli was wasting away; he was barely 18 pounds and going 7-8 days in a row without eating. It had gotten to the point that Adam and I were terrified that he was going to pass away in his sleep. We took turns staying up at night, watching him and making sure he was okay. He had periods of time during the day that he would be up, walking and talking, but would be blue and ice cold. At that point, the doctors still didn’t know why he was doing that and still didn’t know why he wasn’t eating. He went from using multiple words to pointing and grunting. Without nutrition, he basically lost the ability to speak. We were so relieved when the doctor finally said it was time for a feeding tube. The change was night and day! He began talking almost instantly after getting his button. He stopped turning blue and cold (doctors now think it was GERD that was corrected by getting the feeding tube). Night became much more peaceful and restful for all of us. Eli’s feeding tube saved his life. People always say, “He looks so healthy!” or “He doesn’t look sick!” Eli is healthy BECAUSE of his feeding tube. He doesn’t look sick BECAUSE he is getting nourishment now. Was it scary getting a feeding tube? Yes. However, I am fully convinced that he is here today solely because of his feeding tube. It saved his life!