Tube Weaning - Day 5

It feels a little ironic that we are kicking off Feeding Tube Awareness week by saying goodbye to Max's tube meals. We're taking a pretty intensive approach to helping Max become an eater, and while we are being followed by our local feeding clinic, we are largely taking on the task on our own. This is in part due to the lack of supports in place for people who are tube fed.

Tube feeding is largely associated with end-of-life of care, and so many people don't realize how many children (and adults) rely on feeding tubes to live and thrive. There are myriad reasons why people need feeding tubes, from motility disorders, Eosinophilic Disorders, Mitochondrial disease, swallowing disorders, to name just a few. Feeding tubes are life saving. For some they are a temporary solution, for others they are a permanent need. Feeding tubes are a way of life for many families, and raising awareness is a small step to understanding and acceptance.

Max has been fed through a tube for his whole life - first through an OG (orogastric), then an NG (nasogastric), and now a G (gastric). During Max's first 6 months he underwent a great deal of medical trauma, much of it oriented around his face and mouth. He was intubated for months, undergoing several reintubations during that time. Even once he no longer had a breathing tube in his mouth and down his throat, he had a feeding tube regularly inserted into his nose and down his throat. This trauma left him with a severe oral aversion. He didn't like having his mouth touched, and anything even touching his tongue would make him gag and throw up. His g-tube allowed him to be nourished at home while he recovered from the trauma and learned to trust things near his mouth again. Unfortunately during that time he became dependent on his feeding tube, a common, but rarely discussed side effect of tube feeding.

Max doesn't eat because he has never felt hunger and does not know what eating is. That instinct is lying dormant somewhere within him. Eating comes with a certain amount of fear and apprehension for Max. He doesn't know how to suck from a bottle or straw, because he never learned as a baby. He has trouble chewing and swallowing food without gagging, because they are skills he has not had the opportunity to develop. Food does not yet interest him in the way it does other children. He can not be coaxed with a cookie, or a french fry, or some other special treat. Hunger needs to be his motivator, and for that to happen we have to stop feeding him. It's completely antithetical to everything we've been doing up until this point.

Tomorrow we'll wake up and go about our day, surrounding ourselves in food, but we won't feed our child. Max will grow hungry, and likely confused, and irritable, and he will face an internal struggle over his own identity. Max is not someone who eats. We're asking him to become a whole new person. He'll struggle, and fall, and hopefully get back up and nibble his way into a new him.

We are so grateful for the life that Max's feeding tube has allowed him. Hopefully, we are just beginning a whole new tube-free chapter.