"It's like an earring...?"

Fridays are the exciting (scary) days around here. Last Friday we got our first experience with using Diastat on Macayla to stop a long seizure. This Friday, we changed out the valve on Macayla’s feeding tube in her stomach. She has what is called a Genie feeding tube which is basically a button that is flush against her tummy and this button allows you to snap tubing from the feeding pump on to it. Every few months, the valve needs to be replaced. So, we replaced it and that involves pulling the tube out enough to get a clamp on the actual tubing behind the valve. This clamp seals it off while the valve is removed and a new one is put on. The valve change went great, but shortly after, Macayla’s shirt and bed were soaked and smelled like formula. We discovered that the tube had a cut in it. It was pouring out from around the valve when we moved her. At this point, we aren’t sure what to do. We’ve never experienced this before and we were not prepared. I thought that the only way to replace the actual tube that penetrated her tummy was in surgery. So, I am panicked and kicking myself because I was the one that changed the valve and may have damaged the tube with the plastic clamp. She would have to go under anesthesia which is risky. Will she come out of it? Needless to say, I felt terrible and angry. We took her to the surgeon’s office and they looked at it and said, “Yep, we’ll have to do some yankin’!” “What exactly do you mean by that?” I asked. “We just yanked the old one out and thread a new one in,” our nurse said casually. I couldn’t believe that you could just yank it out without pulling her belly open and I really couldn’t believe how casually the nurse said it. But I must remind you that I get the willies if there is a hair wrapped around Macayla’s tube. Yanking it out would make me pass out! Sure enough they just yank it out and the soft, pliable flange inside folds up and comes out. It is painful they say. Macayla didn’t flinch. Well, according to my wife she didn’t. I was outside the room because I wasn’t about to watch. They threaded another one in with a rod and cut it to fit and installed the valve. The nurse told me it is like having your ear pierced. She said that tissue had built around the tube and made a tunnel or hole that stayed open like the hole in a pierced ear. That’s all fine and dandy, but only the pin of an earring goes through the ear, not the diamond stud on the end! Macayla had a flange yanked through her belly. She didn’t flinch and she was back home and eating by 7:30 that night. We weren’t prepared, but the tubes do fail. The valves and the tubes themselves. When they do, it’s a mess and it’s scary. But it was much simpler to fix than we thought. It is painful for most kids. It was described that it felt like having the wind knocked out of you. Macayla can’t express pain properly, so we aren’t sure what she felt. But all is well and we were able learn and prepare for the next time.