our physician is recommending a feeding tube - advice?

fourkidsmom · Jul 7, 2008

My son is 7 yrs old and he is not embarassed of his G-tube, his 2 long scares on his belly or his med port in his upper left hand chest that sticks out. We have never tried to hide anything and always give him the option of what he wants to do. EX: when he goes swimming I asked him do you want to wear a t-shirt so you don't get burnt or go without it. He'll tell me "no- I am not wearing a shirt- why? I won't get burnt." Then he does his thing-- kid have asked him what the tube,port are for and he tells them (He kind of acts like he can't beleive they don't know!!) that's for my med's or my night feeding and he goes on. The kids at school all know him and when a new kid asks questions they usually say what the port, tube or enzymes are for. I think it is good to start them out in school explaining it to the kids so they grow up with it. We actaully took his vest in for show and tell and they thought it was awesome and wanted to use it.

Fourkidsmom

fourkidsmom · Jul 7, 2008

My son is 7 yrs old and he is not embarassed of his G-tube, his 2 long scares on his belly or his med port in his upper left hand chest that sticks out. We have never tried to hide anything and always give him the option of what he wants to do. EX: when he goes swimming I asked him do you want to wear a t-shirt so you don't get burnt or go without it. He'll tell me "no- I am not wearing a shirt- why? I won't get burnt." Then he does his thing-- kid have asked him what the tube,port are for and he tells them (He kind of acts like he can't beleive they don't know!!) that's for my med's or my night feeding and he goes on. The kids at school all know him and when a new kid asks questions they usually say what the port, tube or enzymes are for. I think it is good to start them out in school explaining it to the kids so they grow up with it. We actaully took his vest in for show and tell and they thought it was awesome and wanted to use it.

Fourkidsmom

fourkidsmom · Jul 7, 2008

My son is 7 yrs old and he is not embarassed of his G-tube, his 2 long scares on his belly or his med port in his upper left hand chest that sticks out. We have never tried to hide anything and always give him the option of what he wants to do. EX: when he goes swimming I asked him do you want to wear a t-shirt so you don't get burnt or go without it. He'll tell me "no- I am not wearing a shirt- why? I won't get burnt." Then he does his thing-- kid have asked him what the tube,port are for and he tells them (He kind of acts like he can't beleive they don't know!!) that's for my med's or my night feeding and he goes on. The kids at school all know him and when a new kid asks questions they usually say what the port, tube or enzymes are for. I think it is good to start them out in school explaining it to the kids so they grow up with it. We actaully took his vest in for show and tell and they thought it was awesome and wanted to use it.

Fourkidsmom

fourkidsmom · Jul 7, 2008

My son is 7 yrs old and he is not embarassed of his G-tube, his 2 long scares on his belly or his med port in his upper left hand chest that sticks out. We have never tried to hide anything and always give him the option of what he wants to do. EX: when he goes swimming I asked him do you want to wear a t-shirt so you don't get burnt or go without it. He'll tell me "no- I am not wearing a shirt- why? I won't get burnt." Then he does his thing-- kid have asked him what the tube,port are for and he tells them (He kind of acts like he can't beleive they don't know!!) that's for my med's or my night feeding and he goes on. The kids at school all know him and when a new kid asks questions they usually say what the port, tube or enzymes are for. I think it is good to start them out in school explaining it to the kids so they grow up with it. We actaully took his vest in for show and tell and they thought it was awesome and wanted to use it.

Fourkidsmom

fourkidsmom · Jul 7, 2008

My son is 7 yrs old and he is not embarassed of his G-tube, his 2 long scares on his belly or his med port in his upper left hand chest that sticks out. We have never tried to hide anything and always give him the option of what he wants to do. EX: when he goes swimming I asked him do you want to wear a t-shirt so you don't get burnt or go without it. He'll tell me "no- I am not wearing a shirt- why? I won't get burnt." Then he does his thing-- kid have asked him what the tube,port are for and he tells them (He kind of acts like he can't beleive they don't know!!) that's for my med's or my night feeding and he goes on. The kids at school all know him and when a new kid asks questions they usually say what the port, tube or enzymes are for. I think it is good to start them out in school explaining it to the kids so they grow up with it. We actaully took his vest in for show and tell and they thought it was awesome and wanted to use it.
 
 Fourkidsmom

sdelorenzo · Jul 7, 2008

Megace is a stronger appetite stimulant. My daughter was on cyproheptadine but it didn't help her much. My daughter doesn't care at all about having the g-tube. She has told us on a few occasions she doesn't want it out because she doesn't want to have to eat so much. She actually about the same during the day as she did before, she just doesn't have us getting all uptight about it all the time. It is a huge bonus to not have to stress about how much food she is taking in and a bigger bonus to see her actually gaining weight.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Jul 7, 2008

Megace is a stronger appetite stimulant. My daughter was on cyproheptadine but it didn't help her much. My daughter doesn't care at all about having the g-tube. She has told us on a few occasions she doesn't want it out because she doesn't want to have to eat so much. She actually about the same during the day as she did before, she just doesn't have us getting all uptight about it all the time. It is a huge bonus to not have to stress about how much food she is taking in and a bigger bonus to see her actually gaining weight.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Jul 7, 2008

Megace is a stronger appetite stimulant. My daughter was on cyproheptadine but it didn't help her much. My daughter doesn't care at all about having the g-tube. She has told us on a few occasions she doesn't want it out because she doesn't want to have to eat so much. She actually about the same during the day as she did before, she just doesn't have us getting all uptight about it all the time. It is a huge bonus to not have to stress about how much food she is taking in and a bigger bonus to see her actually gaining weight.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Jul 7, 2008

Megace is a stronger appetite stimulant. My daughter was on cyproheptadine but it didn't help her much. My daughter doesn't care at all about having the g-tube. She has told us on a few occasions she doesn't want it out because she doesn't want to have to eat so much. She actually about the same during the day as she did before, she just doesn't have us getting all uptight about it all the time. It is a huge bonus to not have to stress about how much food she is taking in and a bigger bonus to see her actually gaining weight.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

sdelorenzo · Jul 7, 2008

Megace is a stronger appetite stimulant. My daughter was on cyproheptadine but it didn't help her much. My daughter doesn't care at all about having the g-tube. She has told us on a few occasions she doesn't want it out because she doesn't want to have to eat so much. She actually about the same during the day as she did before, she just doesn't have us getting all uptight about it all the time. It is a huge bonus to not have to stress about how much food she is taking in and a bigger bonus to see her actually gaining weight.
 Sharon, mom of Sophia, 6 and Jack, 4 both with cf

JennyCoulon · Jul 7, 2008

My son is 8 years old and we just celebrated his 2 year anniversary of him having his button. We really debating doing it and pushed it off as long as we could.

He ended up getting strep throat in April and missed half of his soccer season b/c he just couldn't shake it. We went in and they scheduled it for the first Tuesday in June. He is really healthy lung wise but they still did a week of clean out to get him ready.

He went in and did the surgery and came out with a Bard button. The surgeon that did this surgery is the same one that did his surgery to relieve his meconium elias when he was born. It took a little bit longer than usually because he said his scars inside his tummy looked like spider webs.

They did about a 3-4 inche scar just under his chest and inserted it just off to the left side. He also had issues with granulation tissue which finally after it being cut off 1 time and lots of care it went away and we haven't had an issue with it in over a year. He now has the MINI button which locks like the Mickey but is shaped and soft like the Bard.

I would definately suggest doing it. It is hard to make the decision but once you do it is so worth it. I would suggest that you get a plastic mattress cover that covers the whole mattress and the box spring so you don't have to worry if the milk comes detached. I wish I would have had that advise <img src="i/expressions/face-icon-small-happy.gif" border="0">. I hope this helps. If you have more questions please feel free to ask. Many of us here have been through a lot of things like this.

JennyCoulon · Jul 7, 2008

My son is 8 years old and we just celebrated his 2 year anniversary of him having his button. We really debating doing it and pushed it off as long as we could.

He ended up getting strep throat in April and missed half of his soccer season b/c he just couldn't shake it. We went in and they scheduled it for the first Tuesday in June. He is really healthy lung wise but they still did a week of clean out to get him ready.

He went in and did the surgery and came out with a Bard button. The surgeon that did this surgery is the same one that did his surgery to relieve his meconium elias when he was born. It took a little bit longer than usually because he said his scars inside his tummy looked like spider webs.

They did about a 3-4 inche scar just under his chest and inserted it just off to the left side. He also had issues with granulation tissue which finally after it being cut off 1 time and lots of care it went away and we haven't had an issue with it in over a year. He now has the MINI button which locks like the Mickey but is shaped and soft like the Bard.

I would definately suggest doing it. It is hard to make the decision but once you do it is so worth it. I would suggest that you get a plastic mattress cover that covers the whole mattress and the box spring so you don't have to worry if the milk comes detached. I wish I would have had that advise <img src="i/expressions/face-icon-small-happy.gif" border="0">. I hope this helps. If you have more questions please feel free to ask. Many of us here have been through a lot of things like this.

JennyCoulon · Jul 7, 2008

My son is 8 years old and we just celebrated his 2 year anniversary of him having his button. We really debating doing it and pushed it off as long as we could.

He ended up getting strep throat in April and missed half of his soccer season b/c he just couldn't shake it. We went in and they scheduled it for the first Tuesday in June. He is really healthy lung wise but they still did a week of clean out to get him ready.

He went in and did the surgery and came out with a Bard button. The surgeon that did this surgery is the same one that did his surgery to relieve his meconium elias when he was born. It took a little bit longer than usually because he said his scars inside his tummy looked like spider webs.

They did about a 3-4 inche scar just under his chest and inserted it just off to the left side. He also had issues with granulation tissue which finally after it being cut off 1 time and lots of care it went away and we haven't had an issue with it in over a year. He now has the MINI button which locks like the Mickey but is shaped and soft like the Bard.

I would definately suggest doing it. It is hard to make the decision but once you do it is so worth it. I would suggest that you get a plastic mattress cover that covers the whole mattress and the box spring so you don't have to worry if the milk comes detached. I wish I would have had that advise <img src="i/expressions/face-icon-small-happy.gif" border="0">. I hope this helps. If you have more questions please feel free to ask. Many of us here have been through a lot of things like this.

JennyCoulon · Jul 7, 2008

My son is 8 years old and we just celebrated his 2 year anniversary of him having his button. We really debating doing it and pushed it off as long as we could.

He ended up getting strep throat in April and missed half of his soccer season b/c he just couldn't shake it. We went in and they scheduled it for the first Tuesday in June. He is really healthy lung wise but they still did a week of clean out to get him ready.

He went in and did the surgery and came out with a Bard button. The surgeon that did this surgery is the same one that did his surgery to relieve his meconium elias when he was born. It took a little bit longer than usually because he said his scars inside his tummy looked like spider webs.

They did about a 3-4 inche scar just under his chest and inserted it just off to the left side. He also had issues with granulation tissue which finally after it being cut off 1 time and lots of care it went away and we haven't had an issue with it in over a year. He now has the MINI button which locks like the Mickey but is shaped and soft like the Bard.

I would definately suggest doing it. It is hard to make the decision but once you do it is so worth it. I would suggest that you get a plastic mattress cover that covers the whole mattress and the box spring so you don't have to worry if the milk comes detached. I wish I would have had that advise <img src="i/expressions/face-icon-small-happy.gif" border="0">. I hope this helps. If you have more questions please feel free to ask. Many of us here have been through a lot of things like this.

JennyCoulon · Jul 7, 2008

My son is 8 years old and we just celebrated his 2 year anniversary of him having his button. We really debating doing it and pushed it off as long as we could.
 
 He ended up getting strep throat in April and missed half of his soccer season b/c he just couldn't shake it. We went in and they scheduled it for the first Tuesday in June. He is really healthy lung wise but they still did a week of clean out to get him ready.
 
 He went in and did the surgery and came out with a Bard button. The surgeon that did this surgery is the same one that did his surgery to relieve his meconium elias when he was born. It took a little bit longer than usually because he said his scars inside his tummy looked like spider webs.
 
 They did about a 3-4 inche scar just under his chest and inserted it just off to the left side. He also had issues with granulation tissue which finally after it being cut off 1 time and lots of care it went away and we haven't had an issue with it in over a year. He now has the MINI button which locks like the Mickey but is shaped and soft like the Bard.
 
 I would definately suggest doing it. It is hard to make the decision but once you do it is so worth it. I would suggest that you get a plastic mattress cover that covers the whole mattress and the box spring so you don't have to worry if the milk comes detached. I wish I would have had that advise <img src="i/expressions/face-icon-small-happy.gif" border="0">. I hope this helps. If you have more questions please feel free to ask. Many of us here have been through a lot of things like this.

izemmom · Jul 7, 2008

This time last year I was agonizing over wheter or not to go ahead with a g-tube for Emily. She got hers in August last year, and I have never regretted it. YOu are right. It is a HUGE decision and I was so torn up over it. I worried that it would be a ton more work (It isn't). I worried that she would have a lot of pain and that it would slow her down (she has only occasional discomfort if granulation tissue builds up but that's an easy fix and doesn't happen much, and it hasn't slowed her down ONE BIT!!) I worried that people would stare and it and that she'd seem less "perfect" - I'll admit that that last one really did cross my mind...I hated the thought of something in my baby's tummy... (Well, today at the zoo she insisted on pulling her shirt up and showing people her button, and people looked, but she just said, "That's my extra button" and that was that...and it hasn't marred her beautiful appearance at all).

That's a lot of words to say, I know this is scary. But I don't think you'll be sorry you did it.

Her weight gain has not been as huge as we had hoped. She's gained maybe 10 pound over teh last 11 months, and we have yet to pass teh 30th percentile, but, she has been HEALTHY!!! I still would like her to be a more eager eater, but, now I know that she's going to get her calories and nutrition at the end of the day even if she only picks at her food all day long.

I think a 4-year old might have more troubles accepting the tube than my 2 year old did, but, once it's in and she can explain to people why she needs it I think she'll be ok. If you'd like, I can e-mail you some pictures of Emily and her tube so your little girl can see what it's going to look like. PM me and let me know if this is helpful. Also, ask your clinic for the g-tube DVD and booklet if they haven't given them too you already. They will show lots of kids with tubes so she can see that tubes are for all kinds of kids.

Just know that you are not alone in this...we were all scared, and most of us have had good results.

izemmom · Jul 7, 2008

This time last year I was agonizing over wheter or not to go ahead with a g-tube for Emily. She got hers in August last year, and I have never regretted it. YOu are right. It is a HUGE decision and I was so torn up over it. I worried that it would be a ton more work (It isn't). I worried that she would have a lot of pain and that it would slow her down (she has only occasional discomfort if granulation tissue builds up but that's an easy fix and doesn't happen much, and it hasn't slowed her down ONE BIT!!) I worried that people would stare and it and that she'd seem less "perfect" - I'll admit that that last one really did cross my mind...I hated the thought of something in my baby's tummy... (Well, today at the zoo she insisted on pulling her shirt up and showing people her button, and people looked, but she just said, "That's my extra button" and that was that...and it hasn't marred her beautiful appearance at all).

That's a lot of words to say, I know this is scary. But I don't think you'll be sorry you did it.

Her weight gain has not been as huge as we had hoped. She's gained maybe 10 pound over teh last 11 months, and we have yet to pass teh 30th percentile, but, she has been HEALTHY!!! I still would like her to be a more eager eater, but, now I know that she's going to get her calories and nutrition at the end of the day even if she only picks at her food all day long.

I think a 4-year old might have more troubles accepting the tube than my 2 year old did, but, once it's in and she can explain to people why she needs it I think she'll be ok. If you'd like, I can e-mail you some pictures of Emily and her tube so your little girl can see what it's going to look like. PM me and let me know if this is helpful. Also, ask your clinic for the g-tube DVD and booklet if they haven't given them too you already. They will show lots of kids with tubes so she can see that tubes are for all kinds of kids.

Just know that you are not alone in this...we were all scared, and most of us have had good results.

izemmom · Jul 7, 2008

This time last year I was agonizing over wheter or not to go ahead with a g-tube for Emily. She got hers in August last year, and I have never regretted it. YOu are right. It is a HUGE decision and I was so torn up over it. I worried that it would be a ton more work (It isn't). I worried that she would have a lot of pain and that it would slow her down (she has only occasional discomfort if granulation tissue builds up but that's an easy fix and doesn't happen much, and it hasn't slowed her down ONE BIT!!) I worried that people would stare and it and that she'd seem less "perfect" - I'll admit that that last one really did cross my mind...I hated the thought of something in my baby's tummy... (Well, today at the zoo she insisted on pulling her shirt up and showing people her button, and people looked, but she just said, "That's my extra button" and that was that...and it hasn't marred her beautiful appearance at all).

That's a lot of words to say, I know this is scary. But I don't think you'll be sorry you did it.

Her weight gain has not been as huge as we had hoped. She's gained maybe 10 pound over teh last 11 months, and we have yet to pass teh 30th percentile, but, she has been HEALTHY!!! I still would like her to be a more eager eater, but, now I know that she's going to get her calories and nutrition at the end of the day even if she only picks at her food all day long.

I think a 4-year old might have more troubles accepting the tube than my 2 year old did, but, once it's in and she can explain to people why she needs it I think she'll be ok. If you'd like, I can e-mail you some pictures of Emily and her tube so your little girl can see what it's going to look like. PM me and let me know if this is helpful. Also, ask your clinic for the g-tube DVD and booklet if they haven't given them too you already. They will show lots of kids with tubes so she can see that tubes are for all kinds of kids.

Just know that you are not alone in this...we were all scared, and most of us have had good results.

izemmom · Jul 7, 2008

This time last year I was agonizing over wheter or not to go ahead with a g-tube for Emily. She got hers in August last year, and I have never regretted it. YOu are right. It is a HUGE decision and I was so torn up over it. I worried that it would be a ton more work (It isn't). I worried that she would have a lot of pain and that it would slow her down (she has only occasional discomfort if granulation tissue builds up but that's an easy fix and doesn't happen much, and it hasn't slowed her down ONE BIT!!) I worried that people would stare and it and that she'd seem less "perfect" - I'll admit that that last one really did cross my mind...I hated the thought of something in my baby's tummy... (Well, today at the zoo she insisted on pulling her shirt up and showing people her button, and people looked, but she just said, "That's my extra button" and that was that...and it hasn't marred her beautiful appearance at all).

That's a lot of words to say, I know this is scary. But I don't think you'll be sorry you did it.

Her weight gain has not been as huge as we had hoped. She's gained maybe 10 pound over teh last 11 months, and we have yet to pass teh 30th percentile, but, she has been HEALTHY!!! I still would like her to be a more eager eater, but, now I know that she's going to get her calories and nutrition at the end of the day even if she only picks at her food all day long.

I think a 4-year old might have more troubles accepting the tube than my 2 year old did, but, once it's in and she can explain to people why she needs it I think she'll be ok. If you'd like, I can e-mail you some pictures of Emily and her tube so your little girl can see what it's going to look like. PM me and let me know if this is helpful. Also, ask your clinic for the g-tube DVD and booklet if they haven't given them too you already. They will show lots of kids with tubes so she can see that tubes are for all kinds of kids.

Just know that you are not alone in this...we were all scared, and most of us have had good results.

izemmom · Jul 7, 2008

This time last year I was agonizing over wheter or not to go ahead with a g-tube for Emily. She got hers in August last year, and I have never regretted it. YOu are right. It is a HUGE decision and I was so torn up over it. I worried that it would be a ton more work (It isn't). I worried that she would have a lot of pain and that it would slow her down (she has only occasional discomfort if granulation tissue builds up but that's an easy fix and doesn't happen much, and it hasn't slowed her down ONE BIT!!) I worried that people would stare and it and that she'd seem less "perfect" - I'll admit that that last one really did cross my mind...I hated the thought of something in my baby's tummy... (Well, today at the zoo she insisted on pulling her shirt up and showing people her button, and people looked, but she just said, "That's my extra button" and that was that...and it hasn't marred her beautiful appearance at all).
 
 That's a lot of words to say, I know this is scary. But I don't think you'll be sorry you did it.
 
 Her weight gain has not been as huge as we had hoped. She's gained maybe 10 pound over teh last 11 months, and we have yet to pass teh 30th percentile, but, she has been HEALTHY!!! I still would like her to be a more eager eater, but, now I know that she's going to get her calories and nutrition at the end of the day even if she only picks at her food all day long.
 
 I think a 4-year old might have more troubles accepting the tube than my 2 year old did, but, once it's in and she can explain to people why she needs it I think she'll be ok. If you'd like, I can e-mail you some pictures of Emily and her tube so your little girl can see what it's going to look like. PM me and let me know if this is helpful. Also, ask your clinic for the g-tube DVD and booklet if they haven't given them too you already. They will show lots of kids with tubes so she can see that tubes are for all kinds of kids.
 
 Just know that you are not alone in this...we were all scared, and most of us have had good results.

our physician is recommending a feeding tube - advice?

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