G tube removal!

[mom2owen]

Yay! It's that time!! Owen hasn't had a tube feeding in quite a while and his GI had said we can take it out. Woohoo! I am wondering if any one can share any tips. He doesn't want it out (he's always hated changing it) and thinks it will hurt. He also says he worries if he will need one again (we tell him he won't because he can eat so well now). So I'm looking for words of encouragement for him. We mostly focus on how he will be able to swim in lakes and go off the zip line at the pool without holding it in fear of it popping out and the bump in his shirt will be gone. Anything else?
And, procedure related. We have been told we can remove it at home and watch it. If it doesn't close, then take him in. I just don't know how long that will take and what to expect. I think we will have his pediatrician oversee it because his GI is over an hour away. Is there a benefit to the pediatrician doing it instead of us at home? And what has worked to cover it and prevent leakage as it heals?
Thanks so much. We've waited for this day for years!! With Creon and natural maturation on his part, he is doing well with many many foods. Still absolutely no dairy but that's easy enough. He's no giant but he still thinks that's cool because he can hide better on the playground, bless his heart. As a parent, there is nothing better than to see his need for feedings to go away forever! It no doubt saved his life but we are thrilled to say good bye to it.
Thanks for any advice. I hope everyone is well.

 

[baco623]

This is so wonderful to hear!! I am so glad that your son seems to be thriving. How old is he? I had my GI tube first removed when I was 13. As you can imagine, being a 13 year old girl going into my freshman year of high school was trying enough, I was thriving at the time so I didn't need it. When they took my tube out at 13 they just pulled it out in the doctors office. Unfortunately because my GI tube was put in when I was first born (1986) and procedures and medicine for CF were very different back then I ended up needing surgery to close up the hole in my stomach. My recommendation to you would be to have the doctor do it in an office and have them monitor the closer of the hole very closely. From all of the research I have done about it, it should just close up on its own but you never know what could happen. If you are finding that it is leaking when he eats or drinking I would take him in right away so they can close it. You don't want it to be open for a long period of time because it could increase the chance of him getting an infection. I also should tell you I did have to get the G tube put back in when I was 22. At 18 I completely went down hill with my CF and lost about 25 pounds in two years. I was on 16 hours a day of tube feeding by the time I got a double lung transplant in 2010. My situation is kind of unique though because much of the reason I went down hill was because I was a non complient teenager and didn't do my treatments or medications that I was supposed to. You should PM me and we should talk more about it. I want every person (especially children, teenagers and parents) to learn from my mistakes and live a long, healthy and happy life. Sending lots of love and positive thoughts!!

 

[mom2owen]

Thank you so much for the reply. I'm really sorry it has been so hard for you. It's so typical for teens not to be compliant but its just not fair that it is so much harder for you with CF and the impact it had. I will be wishing you all the best.
I think your advice is good, and I would rather have my sons pediatrician take it out. I hope it closes on its own for sure but it is obviously better for her to monitor. I wasn't sure if leakage will be a normal part of the process or not and I'll be curious to see how long his doctor is comfortable giving it to heal on its own. Fingers crossed!!
Thanks again for your suggestions. Sending you lots of love and hugs that its easy breezy for you soon!! Xo

 

[shay]

Hi mom2owen. We had our daughter's g-tube removed just about two years ago. We consulted with our general surgeon at the time. He said we could remove it ourselves and gave us some petroleum gauze dressings to cover it with for the first couple of days. He advised us to not have her eat any HUGE meals for a few hours. We had no problems and the opening closed by itself. No leakage after the first couple of hours. Either you or your pediatrician can remove it. It's no different from changing the tube. My advice would be to do whatever you and your son will be most comfortable with. Best of luck!