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Disclaimer: I am not a doctor or nurse. All of the information in this post is based on my own experience with my son.
My 16-month-old got a g-tube placed at 5 weeks old. It was scary and unknown, but we got used to it. It even started to seem strange that other babies didn’t have feeding tubes.
He was able to slowly take more and more food by mouth and after the worries of winter illnesses, he got his g-tube button out in April. After 13 months of dealing with leakage, granulation tissue, emergency replacement kits, tubes, feeding pumps, feeding pump bags, and worrying the button would be pulled out, it was gone.
But here’s the thing: after over a year of worrying about how fast his stomach would close up if the button came out, I had no idea what we were in for when the doctor purposefully took the button out.
I was informed that it was more likely that the stoma wouldn’t close than that it would. I can’t remember the percentage now, but it wasn’t encouraging.
By the end of the day the button came out, his stoma was definitely too small to fit it back in. However, day after day and week after week, it just kept leaking. I’m not talking a little spot on the gauze either. Like, I would feed him a fruit and veggie puree pouch and maybe 15 minutes later I’d have to change his gauze. There would be a green or pinkish-red circle of thick goop at least the size of a quarter.
Sorry. It’s not a pleasant thought. And the pictures are a little gross. But I would have liked to have known what we were in for, so here you go:
As you can see, sometimes it wasn’t too bad. Some days it looked like the stoma would close just fine. Other days were much more stressful and frustrating.
I guess I should start at the beginning…
He had a lot of granulation tissue for a few months. We’d tried creams and even had the skin cauterized twice. It wasn’t going away. But it wasn’t inflamed or bleeding, either. We were told some kids just get it. And since we planned on taking the button out soon, we didn’t worry too much.
Taking the button out was simple. The GI doctor took the water out of the balloon, pulled it out, and taped gauze on his stomach. It took like two minutes. She gave us a few packages of gauze and a roll of tape. By the time we got home maybe an hour later, he had leaked through the gauze pad and his onesie.
Side note: stock up on some gauze pads and tape in advance. I went through a lot because his stoma leaked for weeks. I went through everything the doctor gave me within 24 hours and had to stress about getting to the store for more. We also only went through maybe two rolls of tape.
For several days (and even sometimes two weeks later) when he would laugh or cry, I could hear the stomach fluid bubble out of his stoma…
I learned a lot about how to tape the gauze. Even though the tape I got was supposed to be gentle, it hurt him when I took it off. He would have a square of little red bumps on his stomach where the tape was. Every time I would lay him down to change his diaper or change his gauze, he would start crying and freaking out. I felt so bad!
I quickly learned to let the tape overlap onto his skin as little as possible (but enough to stay…took some trial and error). I also learned to place the gauze in different positions each time. I would tilt it more one way or the other, unfold it, or move it to the side as much as I could. I did try only taping two sides of the gauze, but the stomach fluid would leak out before the gauze had a chance to absorb it all. So I ended up always taping all four sides.
I did learn to recognize the smell of his stomach fluid. Gross, I know. The first two days or so, I would recommend changing the gauze often or maybe putting it on thicker. Unfortunately, I had to get stomach-fluid stains out of several outfits…
I would guess that the g-tube site would look better without so much granulation tissue. But as the weeks went on, I was more and more sure he would need surgery. Between the extra tissue and the soaked gauze, things weren’t looking up.
I was told to call general surgery if he was still leaking after three weeks. I was still hoping up until the day before we hit three weeks. I called on Monday and had surgery scheduled for that Friday. I was nervous to have to put him through another surgery, but I was also relieved that we were finally going to move past this leaking phase.
The following pictures are just different stages of healing. The one where it is bleeding looks bad. I had a hard time with it. To be honest, that was the day before surgery. I would not have just let that go.
This was my little one’s third surgery, so I had an idea what to expect. However, I had to take him to this one alone. He did awesome and was so cute in the little hospital gown!
I wasn’t expecting the 45-minute estimate for the procedure. But from what I understand, the surgeon closed several layers of tissue…stomach, muscle, skin… They let him take his favorite stuffed panda back with him and even made the hand-off so easy! They turned him away from me and distracted him as they walked away (totally different from when my older son had ear tubes put in at 17 months).
When I was allowed to go see him, he was still asleep and needing some oxygen. When he woke up, he actually wanted the nurse. I’m not sure if he just saw her first or if he was disoriented. We got some milk ready (thickened it due to his delayed swallow trigger), and he took a little bit. We were quickly moved to a room and left alone in the silence.
He snuggled into me and fell asleep. Sweet boy. I really enjoyed those two hours or so sitting in the quiet room holding my now-active baby boy. I was worried his tummy would be sore, but he didn’t seem to notice. He woke up once and finished his bottle and went back to sleep. The nurse asked several times if we were ready to leave, but I knew going home meant noise and chaos and a rowdy big brother.
We were at the hospital a total of less than 6 hours and we left without him having to have any pain meds given since the surgery. He did throw up all over himself right when I pulled out of the parking lot. The nurse told me he might be a little nauseous from the medications and whatnot, so I didn’t worry.
After those original cuddly, sleepy hours, he was back to normal. He wanted to crawl around and climb and play with everything. He did way more than I would have wanted to right after surgery!
I didn’t expect his stomach to look so bruised and rough right away. It didn’t look awful or anything. I just hadn’t known what to expect. Within a week or two the bruising was mostly gone. Now at 6-weeks post-op there is just a little pink line.
The surgeon did tell me it is raised and bumpy under the skin because of the stitches on the muscle and that they should go away in I think it was six months or so. I’m not worried, though. He also told me to keep little man’s stomach covered in the sun this summer or use 50+ sunscreen on it. Other than that, we’ve had our follow-up and things are looking great!
I wish he hadn’t had to have surgery, but I’m honestly so glad we went that route. We gave his tummy a chance to heal on its own, but healing from surgery has been 10x better than “healing” from the g-tube button. At least for us.
I had no idea what life would be like after the g-tube and did not in the least bit expect my guy to need surgery, so I hope this information helps someone to be a little more prepared!
