Has anyone ever been able to get rid of their g-tube?

[just1more]

M has had one since 3 months old, pushing 7+ years now. We haven't used regularly in over 18 months. However, we were very strongly suggested to leave it in for a couple of reasons:

1) If it isn't hurting anything, leave it alone it can be very beneficial when they are sick.
2) At some point it will have to go back in, this is the reality of CF for most that eating becomes too much. At that point you are faced with both the surgery itself; and more importantly to our CF center the mental blow to the patient/family of admitting that the time has come you can no longer do without it.

That said, I do wish M didn't have his since we don't 'need' it. However, now that he is used to it, and we aren't having leaking or other issues I don't see a reason to argue with the Dr's this time (rare for us).

 

[just1more]

M has had one since 3 months old, pushing 7+ years now. We haven't used regularly in over 18 months. However, we were very strongly suggested to leave it in for a couple of reasons:

1) If it isn't hurting anything, leave it alone it can be very beneficial when they are sick.
2) At some point it will have to go back in, this is the reality of CF for most that eating becomes too much. At that point you are faced with both the surgery itself; and more importantly to our CF center the mental blow to the patient/family of admitting that the time has come you can no longer do without it.

That said, I do wish M didn't have his since we don't 'need' it. However, now that he is used to it, and we aren't having leaking or other issues I don't see a reason to argue with the Dr's this time (rare for us).

 

[just1more]

M has had one since 3 months old, pushing 7+ years now. We haven't used regularly in over 18 months. However, we were very strongly suggested to leave it in for a couple of reasons:

1) If it isn't hurting anything, leave it alone it can be very beneficial when they are sick.
2) At some point it will have to go back in, this is the reality of CF for most that eating becomes too much. At that point you are faced with both the surgery itself; and more importantly to our CF center the mental blow to the patient/family of admitting that the time has come you can no longer do without it.

That said, I do wish M didn't have his since we don't 'need' it. However, now that he is used to it, and we aren't having leaking or other issues I don't see a reason to argue with the Dr's this time (rare for us).

 

[just1more]

M has had one since 3 months old, pushing 7+ years now. We haven't used regularly in over 18 months. However, we were very strongly suggested to leave it in for a couple of reasons:

1) If it isn't hurting anything, leave it alone it can be very beneficial when they are sick.
2) At some point it will have to go back in, this is the reality of CF for most that eating becomes too much. At that point you are faced with both the surgery itself; and more importantly to our CF center the mental blow to the patient/family of admitting that the time has come you can no longer do without it.

That said, I do wish M didn't have his since we don't 'need' it. However, now that he is used to it, and we aren't having leaking or other issues I don't see a reason to argue with the Dr's this time (rare for us).

 

[just1more]

M has had one since 3 months old, pushing 7+ years now. We haven't used regularly in over 18 months. However, we were very strongly suggested to leave it in for a couple of reasons:
<br />
<br />1) If it isn't hurting anything, leave it alone it can be very beneficial when they are sick.
<br />2) At some point it will have to go back in, this is the reality of CF for most that eating becomes too much. At that point you are faced with both the surgery itself; and more importantly to our CF center the mental blow to the patient/family of admitting that the time has come you can no longer do without it.
<br />
<br />That said, I do wish M didn't have his since we don't 'need' it. However, now that he is used to it, and we aren't having leaking or other issues I don't see a reason to argue with the Dr's this time (rare for us).
<br />
<br />

 

[dadofCFtwins]

I have 4 year old CF twin boys. They do not have a feeding tube but I am also a nurse and work in long-term care. Feeding tubes are removed all the time. I would not jump to get it removed but you could try to ween her off the tube feedings and see what happens. Obviously, with her physicians support but dont be affraid to push back against your physician if it is something you really want and he doesnt want to do it.
As parents, we know our kids better than anyone. There is no clear cut answer for every case.

 

[dadofCFtwins]

I have 4 year old CF twin boys. They do not have a feeding tube but I am also a nurse and work in long-term care. Feeding tubes are removed all the time. I would not jump to get it removed but you could try to ween her off the tube feedings and see what happens. Obviously, with her physicians support but dont be affraid to push back against your physician if it is something you really want and he doesnt want to do it.
As parents, we know our kids better than anyone. There is no clear cut answer for every case.

 

[dadofCFtwins]

I have 4 year old CF twin boys. They do not have a feeding tube but I am also a nurse and work in long-term care. Feeding tubes are removed all the time. I would not jump to get it removed but you could try to ween her off the tube feedings and see what happens. Obviously, with her physicians support but dont be affraid to push back against your physician if it is something you really want and he doesnt want to do it.
As parents, we know our kids better than anyone. There is no clear cut answer for every case.

 

[dadofCFtwins]

I have 4 year old CF twin boys. They do not have a feeding tube but I am also a nurse and work in long-term care. Feeding tubes are removed all the time. I would not jump to get it removed but you could try to ween her off the tube feedings and see what happens. Obviously, with her physicians support but dont be affraid to push back against your physician if it is something you really want and he doesnt want to do it.
As parents, we know our kids better than anyone. There is no clear cut answer for every case.

 

[dadofCFtwins]

I have 4 year old CF twin boys. They do not have a feeding tube but I am also a nurse and work in long-term care. Feeding tubes are removed all the time. I would not jump to get it removed but you could try to ween her off the tube feedings and see what happens. Obviously, with her physicians support but dont be affraid to push back against your physician if it is something you really want and he doesnt want to do it.
<br />As parents, we know our kids better than anyone. There is no clear cut answer for every case.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lrbloms</b></i>

I had a gtube placed when I was 12. I gained 30 pounds in a year. Then I quit doing night feedings. I didn't use my tube for two years in which I was involved in sports and high school activities. I was able to maintain my weight, so my doctors allowed me to take it out. I am now almost 29 and have yet to have weight problems. I actually have to montitor my intake as to not put on too much weight. Hope this helps your decision.</end quote></div>

Thank you for joining the cite to share this with me! It helps so much!

Tom -- I agree that its okay to leave where it is ...for now. I just want to know if its reasonable to work towards not using it. And since my daughter is just three, if she can get rid of it and have less outward medical devices to contend with as she enters school, I want that for her.

Everyone else -- thank you for your input. I'd never just pull her tube out without knowing she can thrive without it and if that means a year or more of having it be completely inactive, I'm fine with that. I just need to know that with CF care that it is a reasonable approach.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lrbloms</b></i>

I had a gtube placed when I was 12. I gained 30 pounds in a year. Then I quit doing night feedings. I didn't use my tube for two years in which I was involved in sports and high school activities. I was able to maintain my weight, so my doctors allowed me to take it out. I am now almost 29 and have yet to have weight problems. I actually have to montitor my intake as to not put on too much weight. Hope this helps your decision.</end quote></div>

Thank you for joining the cite to share this with me! It helps so much!

Tom -- I agree that its okay to leave where it is ...for now. I just want to know if its reasonable to work towards not using it. And since my daughter is just three, if she can get rid of it and have less outward medical devices to contend with as she enters school, I want that for her.

Everyone else -- thank you for your input. I'd never just pull her tube out without knowing she can thrive without it and if that means a year or more of having it be completely inactive, I'm fine with that. I just need to know that with CF care that it is a reasonable approach.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lrbloms</b></i>

I had a gtube placed when I was 12. I gained 30 pounds in a year. Then I quit doing night feedings. I didn't use my tube for two years in which I was involved in sports and high school activities. I was able to maintain my weight, so my doctors allowed me to take it out. I am now almost 29 and have yet to have weight problems. I actually have to montitor my intake as to not put on too much weight. Hope this helps your decision.</end quote></div>

Thank you for joining the cite to share this with me! It helps so much!

Tom -- I agree that its okay to leave where it is ...for now. I just want to know if its reasonable to work towards not using it. And since my daughter is just three, if she can get rid of it and have less outward medical devices to contend with as she enters school, I want that for her.

Everyone else -- thank you for your input. I'd never just pull her tube out without knowing she can thrive without it and if that means a year or more of having it be completely inactive, I'm fine with that. I just need to know that with CF care that it is a reasonable approach.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lrbloms</b></i>

I had a gtube placed when I was 12. I gained 30 pounds in a year. Then I quit doing night feedings. I didn't use my tube for two years in which I was involved in sports and high school activities. I was able to maintain my weight, so my doctors allowed me to take it out. I am now almost 29 and have yet to have weight problems. I actually have to montitor my intake as to not put on too much weight. Hope this helps your decision.</end quote>

Thank you for joining the cite to share this with me! It helps so much!

Tom -- I agree that its okay to leave where it is ...for now. I just want to know if its reasonable to work towards not using it. And since my daughter is just three, if she can get rid of it and have less outward medical devices to contend with as she enters school, I want that for her.

Everyone else -- thank you for your input. I'd never just pull her tube out without knowing she can thrive without it and if that means a year or more of having it be completely inactive, I'm fine with that. I just need to know that with CF care that it is a reasonable approach.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lrbloms</b></i>
<br />
<br />I had a gtube placed when I was 12. I gained 30 pounds in a year. Then I quit doing night feedings. I didn't use my tube for two years in which I was involved in sports and high school activities. I was able to maintain my weight, so my doctors allowed me to take it out. I am now almost 29 and have yet to have weight problems. I actually have to montitor my intake as to not put on too much weight. Hope this helps your decision.</end quote>
<br />
<br />Thank you for joining the cite to share this with me! It helps so much!
<br />
<br />Tom -- I agree that its okay to leave where it is ...for now. I just want to know if its reasonable to work towards not using it. And since my daughter is just three, if she can get rid of it and have less outward medical devices to contend with as she enters school, I want that for her.
<br />
<br />Everyone else -- thank you for your input. I'd never just pull her tube out without knowing she can thrive without it and if that means a year or more of having it be completely inactive, I'm fine with that. I just need to know that with CF care that it is a reasonable approach.

 

[NanaOf8GirlsAndCounting]

Graycie's had her G-tube since around 5months, she is now almost 15mos. For the last few months there have been no night feedings for her. We thought about having it removed but after talking it over realized that flu season is on the way. Since was in the hospital for 6months and then went back in for 2 weeks in Dec. so since it isn't hurting anything its staying for now. Her meds are still going through the G-tube and when she is sick it takes alot of the worry about her weight off your mind. When she is to busy to eat, its easy to boulbous her during the day. I hate to see it go because I don't want her to go back to where she was in the being of all this. I read alot about older kids getting them later and would hate to have it taken out and then put back in. Maybe one day, but we are now not in any hurry.

 

[NanaOf8GirlsAndCounting]

Graycie's had her G-tube since around 5months, she is now almost 15mos. For the last few months there have been no night feedings for her. We thought about having it removed but after talking it over realized that flu season is on the way. Since was in the hospital for 6months and then went back in for 2 weeks in Dec. so since it isn't hurting anything its staying for now. Her meds are still going through the G-tube and when she is sick it takes alot of the worry about her weight off your mind. When she is to busy to eat, its easy to boulbous her during the day. I hate to see it go because I don't want her to go back to where she was in the being of all this. I read alot about older kids getting them later and would hate to have it taken out and then put back in. Maybe one day, but we are now not in any hurry.

 

[NanaOf8GirlsAndCounting]

Graycie's had her G-tube since around 5months, she is now almost 15mos. For the last few months there have been no night feedings for her. We thought about having it removed but after talking it over realized that flu season is on the way. Since was in the hospital for 6months and then went back in for 2 weeks in Dec. so since it isn't hurting anything its staying for now. Her meds are still going through the G-tube and when she is sick it takes alot of the worry about her weight off your mind. When she is to busy to eat, its easy to boulbous her during the day. I hate to see it go because I don't want her to go back to where she was in the being of all this. I read alot about older kids getting them later and would hate to have it taken out and then put back in. Maybe one day, but we are now not in any hurry.

 

[NanaOf8GirlsAndCounting]

Graycie's had her G-tube since around 5months, she is now almost 15mos. For the last few months there have been no night feedings for her. We thought about having it removed but after talking it over realized that flu season is on the way. Since was in the hospital for 6months and then went back in for 2 weeks in Dec. so since it isn't hurting anything its staying for now. Her meds are still going through the G-tube and when she is sick it takes alot of the worry about her weight off your mind. When she is to busy to eat, its easy to boulbous her during the day. I hate to see it go because I don't want her to go back to where she was in the being of all this. I read alot about older kids getting them later and would hate to have it taken out and then put back in. Maybe one day, but we are now not in any hurry.

 

[NanaOf8GirlsAndCounting]

Graycie's had her G-tube since around 5months, she is now almost 15mos. For the last few months there have been no night feedings for her. We thought about having it removed but after talking it over realized that flu season is on the way. Since was in the hospital for 6months and then went back in for 2 weeks in Dec. so since it isn't hurting anything its staying for now. Her meds are still going through the G-tube and when she is sick it takes alot of the worry about her weight off your mind. When she is to busy to eat, its easy to boulbous her during the day. I hate to see it go because I don't want her to go back to where she was in the being of all this. I read alot about older kids getting them later and would hate to have it taken out and then put back in. Maybe one day, but we are now not in any hurry.