I read a blog today that mentioned how feeding tubes are a form of life support and was stopped in my tracks. I never really thought about it that way. But when I allow myself to think about it, I am astounded by how amazing medical advances are and how they save my child's life each and every day. Carter's feeding tube, 14 medications and his special formula are what keep him alive. I can't even imagine what life would be like without these things. Carter probably wouldn't even be with us today, if it weren't for them. When we were first faced with the possibility of a feeding tube, I instantly shot it down and said that I didn't want to do that to Carter. The mention of a "feeding tube" just sounded devastating and final, as though we were giving up and this was it. It was daunting and scary for us. Now after 3 years, his feeding tube is an absolute way of life for us. I don't even think twice when I hook up his tube extensions or administer his feeds. I remember being afraid to go forward with the surgery and was fearful of whether it was the right decision or not. Carter was only 2.5 when he had it done…just a baby. We had no idea what we were getting into; there aren't classes on this, although there should be. It was a decision made solely on the recommendation of the neuro geneticist in Atlanta who diagnosed him. He told us that it was crucial and necessary with Carter's condition and failure to thrive. I put all of my faith in that doctor and dove in head first, with no life preserver or divers training. The day before his surgery, I sat in pre-op bawling my eyes out. The sweet nurse who sat with me tracked down a learning DVD so that I could watch it that night in hopes that it would bring me some peace in my decision. After I watched the DVD that evening, I put Carter in the bath. I cried as I washed his tubeless belly for the last time. No DVD or coaching could prepare or console me for such a big decision and life changing choice. The next morning, as Carter was being prepped for his surgery, the nurse looked at him and said, "he looks ready, he really needs it". That sentence was just what I needed to hear that morning. He NEEDED the tube. That nurse probably had no idea what profound strength she gave me that day, but I will never forget.
We spent 4 days in the hospital keeping him comfortable with pain medication and I was trained on the basics of the tube. Four days to learn how to keep my baby alive. I had to learn fast and efficiently, because I would have to teach my husband and everyone who would come to care for Carter. The first couple of months were the toughest because when a feeding tube is initially placed, it has to be a PEG (basically a long tube that is connected to a metal disk on the inside of the stomach and can't be removed without surgery) until it heals. We had to learn to tuck it into his pants, but in a way that it wouldn't kink. He was also prescribed round the clock feeds with a 3 hour break. And because the port got stretched out after a week, we had to learn how to meticulously tape the feed hose into the port so that it wouldn't spontaneously pull apart and cause stomach contents and sticky formula to leak everywhere. And of course, that happened A LOT over the 3 months before we could finally have the PEG switched to a button. I questioned our decision many times over those tumultuous 3 months. One thing I have learned over Carter's 5 years of life, is that progress doesn't come easily, but the rewards are huge. Carter's needs and requirements to keep his body functioning have increased with age and the ease of the feeding tube has become effortless; the decision one of the best I have ever made for him. Over the past few years, we have found that Carter is allergic/sensitive to the majority of food and his GI function is so poor, that it is unable to digest meats, gluten, dairy or anything thicker than purees. So his main and only intake is his special hypoallergenic formula, fruit and veggie purees. With all that said, I suppose Carter's feeding tube IS his life support. It gives my husband and I the tools to care for our child who is a miracle and amazing in every way. Here is to 3 years of the feeding tube that is a way of life as we know it.