My Son’s Feeding Tube Journey: From PEG to G-Tube
If you are looking for more information about feeding tubes, check out The Ultimate G-Tube Resource Guide on my personal blog.
I am sharing my son’s story as well as sharing a curated collection of the many photos I took of him during the 4 1/2 years he had a feeding tube.
My son, Apollo, had a feeding tube from the age of 22 months until he was six and a half years old. Then entire time his g-tube was in place we had a love-hate relationship with tube feeding. I loved that the tube allowed him to be fed- it literally kept him alive, but at the same time hated the foreign object sticking out of his stomach. I hated the seemingly constant g-tube infections and irritation. I hated always worrying that it would be caught on something and pulled out.
G-Tube Due to Compression of Esophagus
Apollo’s feeding tube was placed due to compression on his esophagus that made eating extremely difficult. Every bite of food had to be washed down with water and he was constantly at risk of choking.
I took hundreds of photos over the years that Apollo had his feeding tube. Part of me wanted to document this detail of his life, just as I document the other areas. Another part of me wanted to normalize tube-feeding. I wanted others to be familiar with the way my son ate. Here is a collection of feeding tube images I have taken over the years.
If you want to purchase any of these for presentations, books, publication etc, feel free to contact me.
One of the first things to learn about having a tube-fed toddler was how to manage feedings out in public without undressing him. Button up shirts turned out to be one great option. One-piece clothing and bodysuits, not so much.
Life Goes On and Shouldn’t be Limited by G-Tube
My husband, Chuck, and I were determined to let Apollo live his best life tube fed or not. We fed him on the go wherever we were and tried to avoid limiting him from typical toddler activities… This is one of my favorite images of him…taking a break on the beach while he eats his lunch via g-tube.
Apollo being tube-fed on a camping trip. I’ll be honest, camping with a g-tube could be complicated, but we always found a way to make it work.
Apollo being fed via g-tube at the Houston Zoo. We had to take Apollo to Texas when he was just 2 1/2 to have his double aortic arch repaired.
Apollo’s G-Tube Meant a Lot of Downtime as he Recovered
When Apollo’s g-tube was placed, the hospital sent us home with a tiny backpack to hold his feeding pump so he could remain active while being tube fed. Unfortunately, Apollo had a thoracotomy just six weeks earlier. The large scar on his back wasn’t yet healed and he couldn’t wear the backpack. This meant lots of downtime and DVD’s to keep his still during feedings.
PEG before Mic-Key
Back in 20012 when Apollo had his feeding tube placed, Seattle Children’s Hospital policy was to first put in a PEG tube and after letting the stoma heal for three months, to replace it with a smaller g-tube called a mic-key.
The PEG was a nightmare, as it left 8 inches of tubing hanging out of son’s stomach…and we had to guard it carefully to make sure it wasn’t pulled out.
We love living in the Pacific Northwest and exploring during the summer months. We never let Apollo’s g-tube didn’t stop us from enjoying a day at the beach.
Tube Feeding in a Car Seat Provided Challenges
Tube-feeding on road trips could be a challenge. Trying to access Apollo’s feeding tube while he was buckled into his car seat propery required some planning ahead. If we were going on a long trip and planning to tube feed him while driving we would attach his extension while buckling him in so it was accessible during the drive.
As Apollo grew we always tried to show him that his g-tube wasn’t anything to be embarrassed about. We tried to instill confidence in him that this was just a different way of eating. He didn’t always feel that way but we did our best to normalize it.
Apollo had his g-tube removed and surgically closed when he was six-years-old. Unfortunately, he developed a staph infection and had to have his wound opened and drained. He eventually recovered and is now thriving.
Apollo’s scar is amazingly small, given all he went through with staph.
For several years, we knew it was a possibility that he would be tube-fed into adulthood. Now, at age nine, he proudly shows off his scar and is starting to forget what it was like to be tube-fed.