Sarah’s parents were reluctant to add another doctor or medical group to their already complicated team of professionals. They consulted with the physicians from their inpatient behavioral feeding program. The program suggested that Sarah had “dumping syndrome”, a scenario in which the body rapidly expels food or liquid through the digestive system due to a damaged GI system. Dumping syndrome is common in children who have had Nissen fundoplications, as Sarah had along with her g-tube placement. The symptoms didn’t add up though, and Sarah’s parents felt uncomfortable with such a serious diagnosis made over a phone conversation. Sarah’s pediatrician was also out of ideas and further recommended to the family to another feeding team lead by a GI doctor.
This new feeding team suggested the placement of a g/j-tube (combination gastronomy tube and jejunostomy tube), which would allow for Sarah’s formula to be dripped slowly into the jejunum, the second part of the small intestine, just past the lower sphincter of the stomach.
Sarah’s parents were initially afraid of another “medical” procedure. Especially when they had been told that the placement of the g-tube would solve many of their problems and in turn caused many more than they could have imagined. They were also concerned about what a j-tube would mean for their daughter. A j-tube meant that Sarah’s feedings would need to run for most of the day. She would have to wear the small feeding pump in a backpack during the day. Would she still be able to participate in dance class? What about playing outside with other kids at their neighborhood park? What about swimming in the lake during the summer? Fortunately, the new GI doctor walked through the entire process with both parents. Sarah would be able to participate in most activities with only a few modifications. For certain activities, the feeding could be stopped for a few hours to allow her a little more freedom. Eventually, they would try to run the feedings overnight, so that Sarah would have even more time “off the pump” during the day.
Lesson #6: Sometimes one finish line is the start of another journey.
Even though Sarah is now tolerating her tube feedings, gaining weight, growing, and happy; the real work is about to begin. This is the beginning of the true feeding therapy. Now that Sarah’s medical needs are met and she is comfortable, we will begin to explore ways to help her eat comfortably by mouth.