Hi, I am not a teen but my son is 15 and has CF and autism. He is not able to ask the questions himself so I hope no one is offended that I am going to ask them for him. My son is having a hard time gaining weight. He is 5 ft. 3 and weighs 72 lbs. We have been discussing a g-tube. I was wondering if anyone could give me information on what to expect from the surgery,(how much pain to expect, if pain meds where used, what to expect during hospital stay, ect.) I would so appreciate any information from people close to his age to help me better prepare him if we decide to do this. Even though he is 15, he is much younger developmentally so I want to have some idea what he can expect. Also, how long did it take for you to recover once coming home? Thanks so much, Janelle
Questions for those with G-tubes
- Thread starter jshet
- Start date
beautifulsoul
Super Moderator
Hi Janelle,
I had my G-tube placed when I was 11 years old. (I'm 21 now) I can't remember too much about it but hopefully enough to give you some helpful information. I can't recall how long the actual surgery takes. I think I was in the hospital for maybe 3 days. I'm sure they gave me some type of pain medicine. I know the nurses/educator will teach you how to use the G-tube, the feeding pump, and show you the bags and other supplies that are used. As far as the recovery time when I came home, from what I can remember I would say it was about 1-2 weeks. I know they had the tube in place with Suture stitches afterwards for a couple of days. That was so long ago though, I'm not sure if they still do that.
I suggest that you repost this again under our topic "Families" There are some mother's here with children that have G-tubes. They might be a little more helpful with this topic than me.
Good Luck
Hugs to you...
I had my G-tube placed when I was 11 years old. (I'm 21 now) I can't remember too much about it but hopefully enough to give you some helpful information. I can't recall how long the actual surgery takes. I think I was in the hospital for maybe 3 days. I'm sure they gave me some type of pain medicine. I know the nurses/educator will teach you how to use the G-tube, the feeding pump, and show you the bags and other supplies that are used. As far as the recovery time when I came home, from what I can remember I would say it was about 1-2 weeks. I know they had the tube in place with Suture stitches afterwards for a couple of days. That was so long ago though, I'm not sure if they still do that.
I suggest that you repost this again under our topic "Families" There are some mother's here with children that have G-tubes. They might be a little more helpful with this topic than me.
Good Luck
Hugs to you...
My daughhter got a g tube 2 1/2 years ago and I wish I would have gotten her one sooner. She has always had a hard time gaining weight which effects lung function. She is doing so much better with the extra nutrition. I highly recommend it. Once you get use to it, it's no problem to maintain.
LittleFlav
New member
Hi I was 14 when my gtube was placed. I'm 16 now and I still have it. It was very uncomfortable when I was in the hospital. I was on enough pain meds that i was in and out of sleep and didn't have to deal with it much for the first 24 hours. I do remember have to take short quick breathes because of the ssoreness of my abdominal area. Which was q concern for doctors because obviously with cf they want you to use your full lung capacity. After about 4 days it was fine. With mine after a month they removed the tube and placed a button. With only goes into the stomach about an inch. The tube which prepares the stomach wall for the placement of the button was about 8 inches. I struggled with this because they removed it while I was awake. It hurt quite a lot and the nurse who removed it told me I turned white as a sheet when she pulled it out. if he has to have this done I would ask the doctor for a slight sedative or q pain killer like a good dose of vicidon or oxycodone because I wish they would've done that for me. I hope this is helpful in determining how it will go considering I was about his age when mine was placed.
V
VAmom
Guest
Hi Janelle. My son had a g-tube from 12 to 18 years old. It was removed at 18 at his request. He did have discomfort for a while. Chest therapy with the vest was a bit of a problem. I believe it was a couple of weeks before he started using his vest again. The doctor gave him large pieces of foam which we put inside the vest around the tube to protect it. This helped a lot.
The other problem my son had was nausea, which was impacted by the flow rate of the pump. I would get up about an hour before him and reduce the flow rate so he didn't feel as nauseated when he woke up. I didn't want the tube feed to finish very long before he got up as I wanted him to take enzymes as soon as it was done.
The other problem my son had was nausea, which was impacted by the flow rate of the pump. I would get up about an hour before him and reduce the flow rate so he didn't feel as nauseated when he woke up. I didn't want the tube feed to finish very long before he got up as I wanted him to take enzymes as soon as it was done.
JennyCoulon
New member
Our oldest son is 13 and has had a g-button since he was 5. I can say that we waited too long before he got it b/c he ended up getting sick and couldn't fight the infection due to no reserve. It was a great decision for us and for him as well. No one wants their child to have to go thru surgery but it gets to a point when it is very difficult to keep pushing and pushing for them to eat, eat, eat and it stresses everyone out. My 7 year old just got his last July and even his surgery type and g-button placement was different from 8 years ago. My oldest is on an appetite stimulant as well so he eats good during the day but he gets the majority of his daily calories needed thru his g-button feeds. Our oldest is 86.8 lbs and is just over 5 ft and I just remember before he got the g-button that he was 39 lbs. forever. Our 7 year old was about 34 lbs. when he got his g-button and is now 47 lbs. I think it is a huge benefit to have and yes things are different but my kids both still play soccer and basketball and our 7 year old wants to play football next Fall. Please let me know if you have any direct questions that I can help with.
aspiringactress
New member
I have had my g-tube since I was 3 1/2. I'm 13 now. I don't remember anything, but my mom says they sedated me pretty well, just make sure to ask for the 'Mickey' g-tube because its as small as they come. I've had three different kinds. You'll have to change to tubes about once a year, so you'll see a hole in his stomach. I just don't want you to be unprepared!
azdesertrat
New member
I'd like to ask a dumb question, if I may.
When someone with CF has a G-tube, can they still eat or is all food taken in via the G-tube?
Thanks, 'Pat'.
When someone with CF has a G-tube, can they still eat or is all food taken in via the G-tube?
Thanks, 'Pat'.
aspiringactress
New member
You can still eat anything you want. It's just extra supplements.
beautifulsoul
Super Moderator
Pat, no question is a dumb question
aspiringactress is correct though. You can still eat anything you want whenever you want. The G-tube is for EXTRA nutrition and is very helpful for hospital stays or sick days when there is no appetite.