Corrigan has had his feeding tube for four full years now and it is now as much a part of his life, and body, as the nose on his face. Prior to the feeding tube my life revolved around teaspoons of formula at a time, every fifteen minutes a day, twenty-four hours a day. Children with his disorder often have feeding issues, possibly related to elevated levels of serotonin in the brain, but because their stability relies on very precise, calculated amounts of nutrients and fluids, a child with a Urea Cycle Disorder that refuses nutrition is at risk of decompensating quickly, possibly leading to hyperammonemia- which then can lead to brain damage, coma or death. Scary stuff.
Also, the medicine that he takes to scrub ammonia from his system relies heavily on urination to help excrete the scavenged ammonia, a clear pathway out of the body. In order to encourage that process, children with UCD’s are often prescribed large daily amounts of fluids, which we were having a terrible time meeting when he began refusing things by mouth. Before the g-tube, in order to keep him stable and out of the hospital, I would follow him around with 10ml syringes full of formula, squirting tiny bits into the back corner of his mouth and then holding his mouth shut until he swallowed. That sounds terrible doesn’t it? It was. It truly was. But I was desperate and eventually our only choice was enteral feeding.
I was so frightened before the procedure, but I had no reason to be. I spent a lot of time talking with experienced tubie moms in order to understand our new life, and the hospital did a great job training us before they sent us home. The surgery went smoothly, we have had no major infections or issues, and while I was naive and had hoped that he would be able to be “reasoned” with by this age (6) and be tubie-free, I don’t dwell too much on when it will be removed. The tube is how my son receives his nutrition, it quite literally saves his life each and every day, so I am not in any hurry to upset the apple cart. I love that little piece of plastic and silicone more than coffee, and that’s saying something!
We have had some incidents when the g-tube button was accidentally yanked from his stomach, and that wasn’t any fun at all, but we do all of the changes at home (aside from one run to the ER when he pulled it out in the middle of the night and the hole closed up a bit by the time I realized. They were able to dilate the stoma and get a new tube in quickly) and the last three changes Corrigan has laid still and waited while I put a new one in, without any tears or fuss. This is a huge change from the first few years when button changes left us sweaty and in tears.
He is tube-fed four times a day, for about 35 minutes per feed. That’s it! He wears his feeding pump in a special backpack and aside from the few minutes it takes to hook him up and get everything started, it does not impact his day in any way. At school he is tube fed right before lunch and after the nurse hooks him up, and starts the pump, he returns to his class and participates in all activities and lessons as normal until his feed ends. His school has had many tube fed children over the years but Corrigan is the first child that has come in with a backpack and the ability to move freely around the school while receiving his vital nutrition. This sure beats waiting in the nurse’s office while the pumps does its thing, and missing out on crucial learning and play time!
Corrigan swims, runs, climbs and plays sports while having a g-tube. He knows how to move and climb in ways that protect his Mic-Key button, he even rolls around on his stomach without any problems. Last weekend we went to a picnic where I am sure most people had never seen a child with a feeding tube, but everyone was kind, though I am sure their natural reaction was one of pity. I recognize it in their eyes, but it doesn’t take long for them to notice that he runs and plays just like any other little boy, and that there is no need to pity him, or our family.
I snapped these photos while at the picnic, my sweet little boy doing what many little boys enjoy doing, playing fetch with a dog, while simultaneously receiving his dinner through his tubie and wearing his backpack. In fact, this scene is so normal to me that I didn’t even notice the backpack when I was editing the photos. All I saw were a boy and a dog on a lovely summer’s evening and I think that by the the time we left for home, that is all who were at the picnic saw too.
I have blogged about Corrigan’s feeding tube many times, including our decision making process and the actual hospitalization. Feel free to check out these older posts. Lots of photos and details:
Thank God for g-tubes!