Posted by Chris Perez
We’re not talkin’ about a mouse here, folks. I mentioned in a previous post that Nolan had his G-Tube replaced during the cardiac cath procedure. So what did that entail? Well let’s go back a minute:
Before Nolan was discharged from the hospital in Feb 2013, he had a G-Tube placed in his stomach, since he didn’t eat by mouth. This tube basically had a fairly sizeable disc on the inside of his skin and one on the outside to hold the tube in place. An extension tube would stick out from there about a foot and we would hook up his feeds to that. It was part of our life: Nolan would always have this tube dangling from him (We couldn’t remove it) we’d take formula, formula bags, and his feed pump everywhere with us since he initially began on continuous feeds before going to what’s called bolus feeds (e.g. 124mL of formula over 30 minutes, 6 times a day). The G-Tube was obnoxious: since it couldn’t be removed, Nolan pretty much couldn’t wear anything that could be zipped up the front, so he’d need to either wear 2-piece outfits or button up outfits. Go out and try to find a bunch of button ups…good luck. The tube would also get snagged on EVERYTHING. And I felt so bad because it would hurt Nolan if it got pulled and he would cry and scream. I hated the G-Tube.
The good news is that G-Tubes of that style aren’t meant for long-term placement, so the GI Team replaced it with a skin-level device, aka the MIC-KEY button. This button would have a very low profile, sitting right at the skin’s surface, which allows for better tummy time, ability to wear different clothes, etc. When the old G-Tube is replaced, the new button is placed in the stoma (hole) and a little balloon is inflated with water, and that’s what holds the button in place. It was supposed to be awesome. The only catch? That tube can come out…scary. And we were sent home with a replacement tube and all the instructions to replace the tube if it came out. Dude, that terrified me…I was NOT thrilled with the idea of having to push a plastic button back into a hole in my son’s stomach. If that makes me a wimp, then fine, I’m a wimp.
All in all, though, the MIC-KEY button was a God-send: there was a new tube extension that plugs directly into the button for feeds. When he isn’t on a feed, we just unhook it and he’s free and clear: no tubes sticking up. That means bring on the zipper outfits! HUZZAH!
About Chris PerezMy name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.
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