I’m 16 and a former tubie. I had a mickey button from when I was a newborn until I was 13 years old. I’ve had a trach tube and 3 heart surgeries before I was 5 (I have Hypoplastic Left Heart Syndrome). I don’t remember having the trach because they removed it when I was 3. But that Gtube was a part of my life. I was always very careful with it. I never wanted to play sports due to fear that it would come out. When I was younger, I hated telling people what that “thing” under my shirt was. I was a shy and socially awkward kid, and I just wanted to fit in like the other girls.
I hated getting my tube changed. Not that it hurt, but I just didn’t like the sensation of the tube being pulled (I thought that one day I would bleed out or something). I would cry until was over. Cauterizations (I think that’s what they’re called) were the worse. I had problems with granulation tissue, so I always needed it done. That stick burns like hell. I think I almost punched the GI Doctor once…
I was allowed to eat by mouth, but I was very picky when I was younger. So I got most of my nourishment from overnight feeds and Pediasure. But as I got older, I actually enjoyed eating food. It bothered me that I never really got to have a sleepover at my friends’ houses because I always needed night feeds. Maybe that motivated me. XD
So when I was 13, they took my tube out for good. They had to stitch it up because it wouldn’t close properly. It hurt to move for about a little more than a week, but then it was fine. I still have some lasting effects though. To this day, I can’t put anything on or near my scar. I feel the need to adjust my shirts so that they won’t feel like they’re on my “tube”. When I’m lying down, I can’t lay on my stomach (don’t wanna rip out my “tube”). In the early days of being tube-free, I would still check to see if my dressing needed to be changed or if my tube wasn’t loose. It’s a habit I’ve always had.
Today, I have scars but I don’t care. My doctor asks me during every checkup “Are you still considering cosmetic surgery for your scars when you get older?” When I was 13, I would’ve said yes. But now, my scars are a part of me. I don’t feel ashamed of telling people about what I’ve been through. My tube was a part of me. And it still sort of is.
Btw, to those kids who have the cool patches around their tube, I envy you. All I had was a boring square of gauze material. I didn’t even know those patches existed.