It seems I properly freaked out my family by describing the feeding tube switchout as a surgical procedure without warning everyone in advance. Sorry about that. To be clear, it wasn't really an operation. At least far as I am concerned, if there are no incisions and no stitches, there was no surgery. What Susan had done last week was the replacement of her old feeding tube, which went into her stomach, with a different kind that goes into her small intestine. They use the same port as the old tube, so didn't need to cut any new holes, but they had to run a camera down her throat so they could see what they were doing. That required general anesthesia, since no five-year-old would calmly cooperate with a tube going down her throat.
To put it in a nutshell, Susan has had a feeding tube (a gastric or g-tube) since she was five months old, because having been born severely premature she never developed the stamina and coordination to eat enough on her own. The g-tube allowed us to pump food directly into her stomach, much like putting gas in a car. It was medically necessary, and it kept her alive, but the g-tube has the side effect of completely screwing with normal hunger instincts. There's a bunch of other medical stuff involved with Susan's inability to eat normally, and I might talk about all that some other time, but right now for the sake of simplicity let's just say that she has had to work hard to learn to eat normally.
Her new gastroenterologist (which, for reasons unknown to me, is abbreviated "G.I.") treats children's feeding disorders with a multidisciplinary approach that uses medication to relieve physical discomfort these kids experience when eating, along with speech, occupational, and behavioral therapy focused on oral-motor coordination and feeding skills. Susan has been getting therapy for years, and has made a lot of progress, but is no where near eating enough to get rid of the tube.
This protocol we've just started will hopefully help Susan make a leap forward in independent eating. The first step was switching to the jeujunal feeding tube (J-tube) that still allows us to pump food into her, but places it into the small intestine instead of the stomach, so it doesn't mess with her ability to experience hunger. The other advantage of the J-tube is that since she doesn't hold the tube feedings in her stomach, she can't vomit them up. For a kid who spent a year of her life vomiting after EVERY feeding and sometimes just for the hell of it, having the food we give her stay in there is a HUGE deal.
So I'm like, why didn't anybody tell us about this tube five years ago, when I was seeing doctor after doctor and begging for help? It beats the hell out of me. She was really sick for a long time, and we very nearly had a major surgical procedure done that would have made her permanently unable to vomit (before I discovered on my own a formula that she could tolerate, but that's an old rant.) If we could have avoided all of that sickness in the first place, her feeding problems would not have become so entrenched, and she'd probably be a lot healthier and less developmentally delayed today. Well, fuck. There's nothing to do about that now. I guess we're just lucky that a specialist in this field has finally moved to this area.
Thursday night she slept like a rock and had no complications at all with using the new tube for the first time. The doctor has us giving her four bottles of Pediasure a night, each of which is about as expensive as a gram of cocaine. If we get it all into her overnight, that meets her nutritional needs for the day, so she is on her own to eat whatever she wants to eat to satisfy hunger. Friday morning she woke up happy, ate a few bites of applesauce for breakfast, and followed her usual routine of being sweet and charming until it was time to leave for school, at which point she tried to beat the crap out of me. I've learned that if I carry her under my arm like a sack of potatoes, her little fists can't reach my face, and by the time I get her to the car she usually has switched from screaming to giggling so it's all okay.