How I Keep My Son's G-Tube Site Healthy

“Wow, that’s the best looking G-tube site I’ve ever seen!”

Those were the first words I heard from the PICU nurse about my son. At the time he was unconscious and using a ventilator, but I understood what the nurse meant.

My son is 19 years old and has had a G-tube for over 13 years. I know from talking to other parents that keeping the site clean and healthy can sometimes be a challenge. Just days before he was admitted to the hospital I was taking pictures of Maxie’s belly to share with a fellow parent in an online group. The other mom had told me that skin around her son’s tube looked red all the time. The G-tube site is a constant topic online, and I have heard from many families over the years that the skin is usually red or that there is leakage around the tube site.

g tube site on skin

I know there are several options available to keep some type of covering over the area, but we were advised against covering the skin with anything and haven’t encountered any of the common problems. I’m not sure how we got so lucky, but we’ve never had any issues with redness, granulation, leaking or infection.

I attribute this mainly to the doctor and the advice that he gave us, which for the most part I followed. He told us to treat it like an earring hole, and after the initial wound healed to leave it uncovered all the time and twist it around so the skin wouldn’t grow back around it. That’s it.

I followed his instructions, but I initially used Neosporin with painkiller on the site until it was completely healed. My son’s doctor actually told me not to put any type of ointment on it, but I love Neosporin and didn’t see the harm. I’m not advocating going against doctor’s orders, but this was just something I decided to do mainly because there is a topical painkiller in Neosporin, and I didn’t want my son to have any more discomfort than necessary.

I’m not bragging, but over the years I have received compliments from every health care professional who has had the occasion to see Max’s G-tube.  If you have a child with any special needs you’ll understand that sometimes any positive reinforcement about the care we’re giving our children is extremely encouraging to a parent trying to navigate through the oftentimes new and unchartered lifestyle.

I never thought much of it, but over the years through social media the special needs world has become so easily accessible that I am in contact with people all over the world on a daily basis, and this G-tube issue is a common theme. Since everyone seems to think that Max’s G-tube site is really amazing, I definitely want to pass on the information we were given so long ago.

I can’t even remember why I was so worried about the fact that one day Max would need this miracle of modern medicine, because for our family it’s just part of the daily schedule. The way he gets nutrition by having a feeding tube has improved Max’s life beyond measure.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Canavan Disease

birds in a flock except for one

Please Don't Forget About 'Ultra-Rare' Diseases on Rare Disease Day

With Rare Disease Day approaching there is an important distinction that needs to be made because “rare disease” does not give an accurate description of Canavan disease. Canavan has recently and more appropriately been designated as an “ultra-rare disease.” While I fully support and understand the need to make people aware of rare diseases I [...]
young man on a ventilator in the hospital

When I Realized Everything I Thought I Knew About Ventilators Was Wrong

“We might need to intubate.” There are few words that I have been anticipating and fearing as much as these. Even though my son, Maxie, was born with Canavan disease and is 19 years old, he has enjoyed extremely good health with only about three respiratory illnesses in his entire life. This is not by accident. We [...]
boy with canavan disease

How I Find My Place as a Mom Whose Child Is Losing 'the Most Basic Motor Function'

I was recently told my 19-year-old son would need a cough assist machine. At first I didn’t think much about it, but then it hit me and I felt the meaning in every cell of my being. As I reflected back his day of diagnosis, the air rushed from my lungs and I felt my heart being ripped [...]
Sad little child, boy, hugging his mother at home, isolated image, copy space. Family concept

When the Life and Death of My Child May Be Determined by a Drug Company

When news that a drug company first became interested in a tiny disease like Canavan, it seemed like a dream come true. It was the exact thing we had all been hoping for. The research and technology I have been tirelessly advocating for and funding since my child was diagnosed in 1998, had been sold for [...]