Please talk to me about Gtubes

[grassisgreener]

I have lots of questions, so I really appreciate anyone who reads this and answers for me!
I am a little overwhelmed when reading about Gtubes because it seems like there are several ways to place the tube (some involving an incision, others endoscopicly, etc) and several types of tubes/buttons etc. And I have not even begun to investigate pumps yet but over the years I have read various posts about some people like one pump over another.

Here are my questions: what is your experience was with placement, tube type, and pump type?
Also, does anyone have a good link to a page that describes this stuff?
Another question, if a pump is set to run for say 4 hours, how are enzymes given over that 4 hour period?
I think that is all I can think of for now, thanks so much for any help you can give me!

 

[grassisgreener]

I have lots of questions, so I really appreciate anyone who reads this and answers for me!
I am a little overwhelmed when reading about Gtubes because it seems like there are several ways to place the tube (some involving an incision, others endoscopicly, etc) and several types of tubes/buttons etc. And I have not even begun to investigate pumps yet but over the years I have read various posts about some people like one pump over another.

Here are my questions: what is your experience was with placement, tube type, and pump type?
Also, does anyone have a good link to a page that describes this stuff?
Another question, if a pump is set to run for say 4 hours, how are enzymes given over that 4 hour period?
I think that is all I can think of for now, thanks so much for any help you can give me!

 

[mysticrose]

Feeding pumps depend in the medical supplies provider you use. At least it has in my experience. We have had the super nice kangaroo pump that part was detachable to a really old dinosaur cruddy model. We move alot that's why ours has changed.
Eznymes is really how it works for the kid. Right now my daughters only take a full dose right before bed and that is it, the pump runs about 6 hrs. At one point we had a doctor that wanted us to crush up the old pill enzymes and put those in the bags. This just didn't work for us at all!

My oldest DD got her feeding tube when they did a fundiplycation and port a cath surgery. She healed quickly with minimal granulation. Right now she has a Mickey button but next visit i am going to ask about the lower profile buttons. She is almost 14 and hates the tube because she feels people can see it.
My second DD got her feeding tube through the gi doc doing an endoscope. Quick and easy she had no issues with the PEG tube untill she and her sister were wrestling. DD1 fell one way DD2 fell another and DD1 happened to grab the tube as she fell. It does make a popping noise when coming out, and a 16 french will shrink down to a 12 French a few hrs while you are in the ER waiting for the GI doc to show up.
It has been totally worth it for us. Both my dds have been gaining weight and at least maintaining. I fought against the feeding tube for YEARS! If I could go back and redo it I would get it from the get go. Right away when she was diagnosed and they suggested it. Not 5 yrs later.
In our experience both surgerys Had a fairly quick recovery time. My mother in law mad the girls belly band type things out of stretchy fabric that went over the tube and held it a bit more secure for them so in the beginning so they weren't hunched over when walking.
Hope I was able to answer some of your questions. Please ask any others that come to mind. I'm pretty sure someone on here will have an answer for you.

Jen mom to 4. 3 w/cf and one lucky red head.

 

[mysticrose]

Feeding pumps depend in the medical supplies provider you use. At least it has in my experience. We have had the super nice kangaroo pump that part was detachable to a really old dinosaur cruddy model. We move alot that's why ours has changed.
Eznymes is really how it works for the kid. Right now my daughters only take a full dose right before bed and that is it, the pump runs about 6 hrs. At one point we had a doctor that wanted us to crush up the old pill enzymes and put those in the bags. This just didn't work for us at all!

My oldest DD got her feeding tube when they did a fundiplycation and port a cath surgery. She healed quickly with minimal granulation. Right now she has a Mickey button but next visit i am going to ask about the lower profile buttons. She is almost 14 and hates the tube because she feels people can see it.
My second DD got her feeding tube through the gi doc doing an endoscope. Quick and easy she had no issues with the PEG tube untill she and her sister were wrestling. DD1 fell one way DD2 fell another and DD1 happened to grab the tube as she fell. It does make a popping noise when coming out, and a 16 french will shrink down to a 12 French a few hrs while you are in the ER waiting for the GI doc to show up.
It has been totally worth it for us. Both my dds have been gaining weight and at least maintaining. I fought against the feeding tube for YEARS! If I could go back and redo it I would get it from the get go. Right away when she was diagnosed and they suggested it. Not 5 yrs later.
In our experience both surgerys Had a fairly quick recovery time. My mother in law mad the girls belly band type things out of stretchy fabric that went over the tube and held it a bit more secure for them so in the beginning so they weren't hunched over when walking.
Hope I was able to answer some of your questions. Please ask any others that come to mind. I'm pretty sure someone on here will have an answer for you.

Jen mom to 4. 3 w/cf and one lucky red head.

 

[curecfnow]

I know it can be hard, but don't let it all overwhelm you. I think your best way to feel comfortable with it is to ask your questions to your surgeon or CF team, I'm hoping you have a team. You will find a lot of different answers to your questions on google or other websites like I did. And it was overwhelming. I took a little information about two different g-tubes and presented them to the surgeon and asked my questions there. In our one on one visit with my child and surgeon, we discussed what would be best for her based on her activity level and ability.

I have two daughters with CF. I will try my best to give you my experience with my 8 yo who has the g-tube. Theresa's g-tube was placed about a year ago due to poor weight gain. Her placement was done endoscopically, which minimized her pain and she has no scar. She has a mic-key button which is pretty easy to maintain. You occasionally have to check the balloon for the correct amount of water which holds the button in place. This is painless and easy to do and takes just a few seconds.

I think that the placement, tube type and button all depend on what your surgeon recommends or is accustomed to placing. I recommend meeting your surgeon and discussing what he wants to do and why.

The pump you receive depends on your medical supplier. If you are not happy with the one they send you, request another one or another brand. We initially used the Joey Kangaroo pump, then after a year we had trouble with the pump for one reason or another so we then used the Infinity pump. But we eventually went back to using the Joey pump because the Infinity had other problems that we didn't want to deal with. Since switching back the the Joey pump, we have had no problems and are happy with it. (Maybe just a bad run of machines earlier on?)

As far as taking enzymes, your dietician or doctor will recommend what is best for you. The regimen that my daugthers follow is that they take a required amount at the beginning of the feed and then a required amount at the end of the feed. I am told that if I can, to achieve optimum benefits for my girls, that I can wake up half way through their feedings and give them the second required dose of enzymes instead of waiting until the end of the feeding. But since that means that I would have to wake up around 3:00 a.m. and also wake them up to swallow their enzymes I just wait until the end of their feeding which is around 6:30 a.m. They usually have no problems as a result. Sometimes a tummy ache, but not often. My advice would be to follow what your doctor/dietician tells you to do.

I don't know of any one link but you can google g-tubes and mic-key buttons. Look at pictures, talk with your surgeon and CF team, get information. I did a lot of research about g-tubes before my husband and I agreed to go through with it. We are glad we did! Her weight gain was significant. She went from the 3rd percentile to the 15th within a few months. Now she is nearing the 30 percentile.

Hope this helps.
Celeste
mom of 6

 

[curecfnow]

I know it can be hard, but don't let it all overwhelm you. I think your best way to feel comfortable with it is to ask your questions to your surgeon or CF team, I'm hoping you have a team. You will find a lot of different answers to your questions on google or other websites like I did. And it was overwhelming. I took a little information about two different g-tubes and presented them to the surgeon and asked my questions there. In our one on one visit with my child and surgeon, we discussed what would be best for her based on her activity level and ability.

I have two daughters with CF. I will try my best to give you my experience with my 8 yo who has the g-tube. Theresa's g-tube was placed about a year ago due to poor weight gain. Her placement was done endoscopically, which minimized her pain and she has no scar. She has a mic-key button which is pretty easy to maintain. You occasionally have to check the balloon for the correct amount of water which holds the button in place. This is painless and easy to do and takes just a few seconds.

I think that the placement, tube type and button all depend on what your surgeon recommends or is accustomed to placing. I recommend meeting your surgeon and discussing what he wants to do and why.

The pump you receive depends on your medical supplier. If you are not happy with the one they send you, request another one or another brand. We initially used the Joey Kangaroo pump, then after a year we had trouble with the pump for one reason or another so we then used the Infinity pump. But we eventually went back to using the Joey pump because the Infinity had other problems that we didn't want to deal with. Since switching back the the Joey pump, we have had no problems and are happy with it. (Maybe just a bad run of machines earlier on?)

As far as taking enzymes, your dietician or doctor will recommend what is best for you. The regimen that my daugthers follow is that they take a required amount at the beginning of the feed and then a required amount at the end of the feed. I am told that if I can, to achieve optimum benefits for my girls, that I can wake up half way through their feedings and give them the second required dose of enzymes instead of waiting until the end of the feeding. But since that means that I would have to wake up around 3:00 a.m. and also wake them up to swallow their enzymes I just wait until the end of their feeding which is around 6:30 a.m. They usually have no problems as a result. Sometimes a tummy ache, but not often. My advice would be to follow what your doctor/dietician tells you to do.

I don't know of any one link but you can google g-tubes and mic-key buttons. Look at pictures, talk with your surgeon and CF team, get information. I did a lot of research about g-tubes before my husband and I agreed to go through with it. We are glad we did! Her weight gain was significant. She went from the 3rd percentile to the 15th within a few months. Now she is nearing the 30 percentile.

Hope this helps.
Celeste
mom of 6

 

[Jane]

Our experience is similar. My boys ( now almost 17 and almost 21) have had their g tubes for 7 years. They have literally been lifesavers for them. The original buttons were Bard buttons which are super low profile and one step placement (no peg), but they need to be replaced via surgery. Josh had his replaced twice in three years before we finally switched to the AMT mini one button - like a Mickey but lower profile. Jess had his Bard for 6 years with no trouble until he outgrew it last year. He also has a mini one now.
We have the kangaroo Joey too- very easy to run. My boys take enzymes before and after. They put viokase powder in the feed formula until it was taken
Off the market. I heard it just came back.
It is a whole new scarey world, but the benefits are huge. You get used to running the pump, kind if formula and works
best.
I would be happy to answer any questions you have. PM me!
Good luck!

 

[Jane]

Our experience is similar. My boys ( now almost 17 and almost 21) have had their g tubes for 7 years. They have literally been lifesavers for them. The original buttons were Bard buttons which are super low profile and one step placement (no peg), but they need to be replaced via surgery. Josh had his replaced twice in three years before we finally switched to the AMT mini one button - like a Mickey but lower profile. Jess had his Bard for 6 years with no trouble until he outgrew it last year. He also has a mini one now.
We have the kangaroo Joey too- very easy to run. My boys take enzymes before and after. They put viokase powder in the feed formula until it was taken
Off the market. I heard it just came back.
It is a whole new scarey world, but the benefits are huge. You get used to running the pump, kind if formula and works
best.
I would be happy to answer any questions you have. PM me!
Good luck!

 

[Jane]

There are lots of videos on YouTube that show the procedure, how the pumps work and how to change the button!

 

[Jane]

There are lots of videos on YouTube that show the procedure, how the pumps work and how to change the button!

 

[rainsmom]

When ash was a baby we had to do night feeds, i had to get up once during the nite and give her enzymes. (gave them to her at the beginning also) The button is an amazing tool.. Ashley Rain did not use her button after 10mths and we removed it when she was 4.. but there were times after that that it would have been very helpful. when she was about 12 the doc mentioned putting one back in... she begin to eat better and gained without. it's hard to swallow, I mean with ALL the other stuff a cf kid has to deal with it really stinks to have a g button, but literally can save a live i truly believe it.

 

[rainsmom]

When ash was a baby we had to do night feeds, i had to get up once during the nite and give her enzymes. (gave them to her at the beginning also) The button is an amazing tool.. Ashley Rain did not use her button after 10mths and we removed it when she was 4.. but there were times after that that it would have been very helpful. when she was about 12 the doc mentioned putting one back in... she begin to eat better and gained without. it's hard to swallow, I mean with ALL the other stuff a cf kid has to deal with it really stinks to have a g button, but literally can save a live i truly believe it.