My almost thirteen year old has had a feeding tube for 8 years now. It’s just a part of who she is and a part of our daily life; I can barely remember what life was like without it {aside from being incredibly stressful}! It doesn’t hold her back at all and gives her a chance to thrive that she did not have without it. She’s a very bright and social kid, and I asked her to help me with this post by giving me a list of the things she most frequently has to explain to her peers about her tube.
“No, I’m not dying.”
Feeding tubes and death are linked for many people who have no real world experience with feeding tubes. They are often presented so dramatically in media, sometimes as a step beyond reasonable efforts to save someone’s life and sometimes as a part of hospice care, but that is not her story. She is living with mitochondrial disease and dysautonomia, which are challenging, but she is thriving in large part because of her feeding tube!
“Yes, it is surgically attached to me.”
Her tube was placed when she was three. There is a part on the outside of her stomach, a small tube that runs into her stomach, and a bolster on the inside of her stomach to hold it in place. It has been replaced many times since then and now she is a GJ button, rather than a G button. A GJ can feed either into the stomach {gastric} or intestines {jejunum}. She has issues with her motility {the rate at which things move through her GI tract} at times so when she is having issues with her stomach, we can feed slowly into her intestines.
“No, it doesn’t hurt.”
It doesn’t hurt her at all. There is a bit of discomfort when she gets it changed out every 3 months, but with daily use there is no pain or discomfort involved. It doesn’t hurt her to hook it up to the pump or unhooked it or give herself medications.
“Yes, I can eat food with my mouth.”
She is physically able to eat, and she does for enjoyment, but she has such a limited and fluctuating intake on her own that it cannot support her growth and development. She also can’t take in enough fluids to help control her dysautonomia without the help of her tube. Before tube placement, we could only give medications that were suppositories or transdermal and it was extremely limiting, so the tube makes it so much easier to give her all the things she needs for nutrition, hydration, and medication.
“Yeah, it beeps. Get used to it.”
Feeding pumps are a little fussy. You can often hear random beeping coming from the little bag she carries her pump and food in. There may be air in the line, there may be a kink in the line, it may be out of formula, or it may have some random error. None of it is a big deal! We are very, very used it. Sometimes the toddler even beeps along with it.
Feeding tubes may be something most people are unfamiliar with, but they are not painful or frightening. To us, a feeding tube is no different than the glasses she wears. It is just a tool that allows our daughter body to function at its very best. We are so thankful for the years of health her feeding tube has given her.
Thank you for sharing that, I know about feeding tubes but, very little. What you shared was informative and nice. I’m glad you shared and hope your daughter continues to do well with the benefits of the GJ buttons and how it must be so much better with those compared to the one. Thanks again!
I’m glad so much has been explained. I’ve seen people with these. What I would like to know is about the feeding tube which is put through the nose into the stomach for those who can’t èat through their mouth for some medical conditions.