The time has come. My daughter just had a G-tube (gastronomy tube, aka “feeding tube”) placed by a surgeon. In the last month, I have educated myself on all the basics and learned far too much about a subject that I never dreamed I would need to know anything about.
The first thing I learned was something I was wrong about. I always thought someone with a G-tube could not take anything by mouth—that is not the case. If it is safe and the doctor and therapist approve, my daughter can still eat her soft solid foods. I am glad for that.
No one prepared me for how messy feeding by G-tube really is. My child did take thickened liquids by mouth with a toddler sippy cup and valve before her G-tube, and I thought that was messy! Don’t be surprised if there are a lot of spills on you, your child, and the bed until you get into a rhythm. Cleaning all the supplies takes time as well, even more time than cleaning the endless sippy cups, valves, and straws.
Having a G-tube requires changes to the style of clothing your child wears, also. Easy access will now become your child’s new “fashion.” It is so much easier, especially in the beginning not to have to fight with clothing or accessories to access your child’s g-button.
My daughter is verbal but does have an intellectual disability so I was not sure how to explain the procedure to her or how she would react. I ended up explaining to her that she has a new “tummy straw” to help her drink so she won’t choke. She liked that explanation and has not complained too much, except from initial pain before healing.
There is a whole new world of vocabulary to learn. Terms like vent, flush, and bolus. A lot of information is available and easy to find on the internet, including teaching videos. Your doctor’s office should be able to answer any questions that you have. They also may have a learning library that includes “how-to” videos and instructional information.
While at the hospital, I got some “bedside training” on how to use the tube, how to give a feeding, and flush the tube after. I also learned what some of the words meant. I am being trained in stages as it is so much information to learn all at once. We have a two-week follow-up and a six-week follow-up where they will teach me a little more each visit. A few days of home visits from skilled nurses can also be beneficial in learning how to use and take care of the g-tube and/or button.
It is a bit of a learning curve and will take some transitioning, but I know it is best for my child so I keep learning!
Children with complex medical needs often benefit from a medical home model of care. Learn more about patient- centered medical home for children with disabilities.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.