One year ago today James had surgery to place his g-tube. I remember the night before surgery, giving James a bath and crying. I fought back tears all day, but as I watched my sweet boy playing happily in the tub, I couldn’t hold them back any longer. He had no idea what was coming. Were we making the right decision? How could I do something that would cause him pain? I hated the thought of what we were about to put James through. I made Andy call a friend of ours, a very trusted friend who knows James, knows feeding, and knows g-tubes. She set my mind at ease and assured me that James was going to be alright. I held onto those words the next morning as they took James for surgery, and as it turns out, she could not have been more right.
During the past year James has gained 8 pounds and grown about 7 inches. One year ago, his weight for height percentile was less than 1%, today it’s 12% – still a little way to go, above 25% is best for brain development – but he’s a lot closer than he was. And that explosion of development that so many people told us about, it’s happening. It took a little longer than we expected, but it’s definitely happening. Seems that a g-tube was the right decision for our little guy.
A g-tube, effective behavior feeding therapy, and support from family and close friends, that’s how we’ve made it through one of the toughest challenges we’ve faced with James. Feeding issues are tricky. When you haven’t experienced them, you don’t understand. It doesn’t make sense because kids eat. Last summer I received all kinds of advice from well-meaning people – Leave James with me for the weekend, I’ll get him to eat. Give him his food and spoon and let him feed himself, that’s what we do. Have you tried pediasure? All kids drink that. Let him play in his food so he can get used to it. I promise you, no family reaches the decision to place a g-tube without exhausting all options and trying everything they can possibly think of to get their child to eat.
We’re nine months out from James’ in-patient stay at the Kennedy Krieger Institute. We still follow his protocol to some degree, but we’ve made several changes, and are working toward more independent feeding. He’s made excellent progress. His most recent favorites are chips and salsa, and Papa John’s breadsticks with marinara sauce. James will begin working with a new feeding therapist soon. We’re looking forward to a fresh perspective and more progress.
Childhood feeding issues present themselves for many different reasons. There is often a complex combination of issues working together that results in a child who won’t eat. James’ feeding disorder was likely caused by the trauma of being intubated for 15 days at 2 1/2 years old, followed by the stress of NG feeds for weeks, and side effects of several medications. Working through those issues is not quick or easy. He’s doing it though, and I couldn’t be more proud of him.