Summer 2018 marks one year since I began thinking about getting a gastrostomy tube (G-tube) for my son, Major. It also marks a year since I broached the subject with my husband, Drew. Come this fall, it will be one year since I brought it up with Major's gastrointestinal (GI) specialist. Lucky for us, it was the day he had planned to bring it up to us.
I like to think we're professionals by now, at least at handling Major's feeding tube! We have a nice groove going with our overnight digestive enzymes and monthly home health delivery of PediaSure®. We don't tube feed Major during the day; just a can of PediaSure® overnight. We continue to call his G-tube his “superhero port” and it really does make him feel strong. He is so compliant and -- frankly -- excited to get his “superhero juice” each evening!
The addition of another layer of treatments for Major has been stressful, no doubt. Even so, the benefits have far outweighed the costs. I'm thankful that we made this decision for Major -- at the right time -- and didn't drag our feet out of fear. I'm also thankful that we worked so hard for three years to keep weight on him, without the help of the G-tube. It's all part of the road to great growth! With any major decision, there's certainly some things I wish I would have known sooner, or before we made the decision. Here are just a few:
- A lot of people without cystic fibrosis get G-tubes. Maybe this sounds strange, but I discovered through social media that many children who don't have a diagnosis like cystic fibrosis need G-tubes themselves. In the years before considering a G-tube, I really dreaded the need for one because of one more treatment that would be added to Major's list of daily treatments. The reality is, there are so many kids that struggle with eating enough, and I was able to eventually reframe the issue. Connecting with another “G-tube mom,” whose daughter doesn't have CF, was the final push for me to bring up getting one for Major. She took the fear away!
- It isn't a huge add to the routine. Cleaning, setting up the feeds, and ordering monthly supplies don't add too much more time to our routine, even less now that we're six months in. We have the hang of things!
- Recovery from surgery was pretty quick. Major only missed one day of preschool and two weeks of gymnastics. I anticipated a lengthier process for him and was pleasantly surprised at how easily he got back to his normal routine. Major has no restrictions or limitations and he isn't careful -- trust me.
- How intimidating the first few feeds can be. I wish I had planned to have help with my first solo setup. Everything is easier with the amazing hospital nurses supervising, right? Luckily, mothers of kids with CF stick together. I was able to text a friend who quickly hopped on FaceTime on several occasions to walk Drew and me through everything.
- It's not a miracle cure for feeding issues. Major's food therapy continued for several months post-surgery. He made incredible strides in his eating! He still has days that I wish he'd eat more. But don't all parents have those? The great thing is, those days are not nearly as frequent. Major's appetite has increased now that he gets more nutrition. Eating begets eating. He eats more, he wants to eat more. Watching Major enjoy food is truly magical.
So, would I do it again? In a heartbeat. Would I do it differently? Timing wise, no. But attitude wise, absolutely. I wish that I hadn't feared a G-tube for the three years Major didn't need one. I could have spent more time in the moment and not worried about what could come. This is a lesson that I learned and plan to apply to the next so-called cystic fibrosis worry. Until then, we'll be here in Iowa growing and gaining, thanks to that superhero port.