A Feeding Tube Journey: The Best Decision We Ever Made
by Julie Michaels
Hannahtopia.com Editor Note: Being that it is summertime, a time often spent in bathing suits – exposing tubies for those with feeding tubes, we felt this story of Sydney’s feeding tube journey was so appropriate to share with everyone this month!
My daughter, Sydney, was diagnosed with Dravet Syndrome when she was 11 months old.
Dravet Syndrome is a catastrophic, intractable epilepsy condition that is characterized by severe, frequent seizures, along with learning disabilities, autistic like tendencies, and autonomic issues. Dravet does not respond well to medications so because of it, patients must try a cocktail of anti-epileptic drugs that often see frequent changes as doctors try to find the cocktail that will work best for the patient.
One of Sydney’s early drugs was Depakote. For Sydney, a side effect of Depakote was decreased appetite. She also developed a hyperactive gag reflex while on it. Just touching the tip of her tongue with a spoon would cause her to gag.
Because of all this, she became very difficult to feed. Sydney was on the ketogenic diet, so her meals were a vital part of her seizure control.
We struggled and struggled for a year and a half to get Sydney to eat. Every mealtime resulted in tears from me.
Coming to Terms with Getting a Feeding Tube
During an hospital admit (due to seizures), one of the doctors described Sydney as “failure to thrive.” I bristled at that comment (thinking he was blaming me for not caring for her), while telling myself that she was only tiny because of being on the keto diet for so long. I couldn’t see what he clearly saw.
Finally, one of Sydney’s therapists talked some sense into me. She advised us to look into getting a feeding tube for Sydney because the struggle and stress just wasn’t worth it. I think I knew for a long time that the Mic-Key button (a Gastrostomy tube also known as a G-tube) was the way to go, but I just fought against it because I didn’t want that outward visible reminder that something wasn’t right with my beloved child.
Once the decision was made, there was a huge surge of relief; although, the anxiety of the unknown was still present. We went through the preliminary testing and met our surgeon. I was pleasantly surprised both at how easy the surgery was and how quickly Sydney recovered from it. The day following surgery, the nursing staff at the hospital gave me all my training on how to change the button, how to feed Sydney through it, and what to do if it ever clogged.
Option to Eat By Mouth
We took Sydney home. I never wanted my child to lose the ability to eat by mouth, so my plan was at every meal time, we would offer Sydney her meal to eat by mouth first. No coaxing, no stress. Just offering it to her. She could eat as much as she was willing to eat of it, and then I would supplement the rest of her calories through her G-tube.
A Nice Surprise!
At first, Sydney still refused to eat by mouth, so there was a lot of keto formula given through her G-tube. Then, after about three weeks of getting some decent calories in her, she began to want to eat by mouth again! I think her body needed those initial calories to remind itself of what hunger was. Sydney began to eat by mouth quite regularly, not often refusing to finish her meals.
Sydney had a huge increase in both weight and height with the addition of the G-tube, and this was great news! Other parent advised me that an increase in weight (as much as 50% weight gain) was not at all unusual following the addition of a G-tube. I’m pretty sure we were definitely close to that within six months of getting Sydney’s G-tube! No one can call Sydney “failure to thrive” now!
Now when I look back at pictures of her before the G-tube, I’m shocked at how thin and tiny she was. I can clearly see now what I couldn’t see then.
Fast Forward to Today
Today Sydney is active, happy, and a little tank!
We got our G-tube back in 2013, but we still have it today, even though we rarely ever need it for feeding. We have found the convenience of having the G-tube is just too great to give up as of this point. We can easily give medications through it when Sydney is sick and sleeping without having to wake her up. And on the rare occasions that Sydney balks at eating, we can give her what she needs easily through her Gtube.
I have often said that making that decision to get a G-tube for Sydney was one of the best decisions, medically, that I ever made for her.
- Understanding Feeding Tubes: A Video from Children’s Hospital of Wisconsin
- Feeding Tube Awareness Foundation: tube feeding basics, navigating life with a feeding tube, resources and more!
Hannahtopia.com Editor Note: Each person’s experience with a G-Tube will be different. There are lots of resources available to support your journey! Hearing from others who have feeding tubes is very helpful to those just beginning to navigate life with a feeding tube. If you would feel comfortable sharing your story please let us know! We would love to share it with our followers. Feeding tube awareness is so important!
Bling Your Tubie
Hannahtopia founder Hannah has a G-tube. She loves to express her personality and show off her tubie with fun, colorful G-tube covers. It’s one of the reasons that Hannahtopia.com carries a variety of quality G-tube covers in kid-appropriate colors and designs. Discover ways you can #blingyourtubie in the G-tube section of our shop!