G-tube (along HMW's post but didn't want to derail her quesitons)

[Treewife]

We are scheduled for G-tube placement on 20 August. It is our first. We are not sure what to expect and HMW's post has me a little worried about the duration/speed of feeding. Also I have purely cosmetic questions...
Does it stink? Does it leak?
How much do those with tubes feel it impacts their away from home life? We have always tried to keep as much of Ashley's treatments at home as possible. She starts High School this fall and we are worried but excited. I am hoping this will help her to get on the weight/siz level as her classmates. She is 5'1" and weighs 85lbs. She was tiny next to her classmates at the 8th grade graduatin.

 

[Treewife]

We are scheduled for G-tube placement on 20 August. It is our first. We are not sure what to expect and HMW's post has me a little worried about the duration/speed of feeding. Also I have purely cosmetic questions...
Does it stink? Does it leak?
How much do those with tubes feel it impacts their away from home life? We have always tried to keep as much of Ashley's treatments at home as possible. She starts High School this fall and we are worried but excited. I am hoping this will help her to get on the weight/siz level as her classmates. She is 5'1" and weighs 85lbs. She was tiny next to her classmates at the 8th grade graduatin.

 

[Treewife]

We are scheduled for G-tube placement on 20 August. It is our first. We are not sure what to expect and HMW's post has me a little worried about the duration/speed of feeding. Also I have purely cosmetic questions...
<br />Does it stink? Does it leak?
<br />How much do those with tubes feel it impacts their away from home life? We have always tried to keep as much of Ashley's treatments at home as possible. She starts High School this fall and we are worried but excited. I am hoping this will help her to get on the weight/siz level as her classmates. She is 5'1" and weighs 85lbs. She was tiny next to her classmates at the 8th grade graduatin.

 

[hmw]

I can't help with most of your questions since it's still so new to us too, but our nutritionist has told us she lets the kids take the night off from feeds for occasional sleepovers away from home... so I am sure that will help when it comes to the 'keeping as much of cf at home as possible'. I'd expressed concern about that myself.

Everyone has been so helpful to me with my endless lists of questions... I am sure they will be for you too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I can't help with most of your questions since it's still so new to us too, but our nutritionist has told us she lets the kids take the night off from feeds for occasional sleepovers away from home... so I am sure that will help when it comes to the 'keeping as much of cf at home as possible'. I'd expressed concern about that myself.

Everyone has been so helpful to me with my endless lists of questions... I am sure they will be for you too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hmw]

I can't help with most of your questions since it's still so new to us too, but our nutritionist has told us she lets the kids take the night off from feeds for occasional sleepovers away from home... so I am sure that will help when it comes to the 'keeping as much of cf at home as possible'. I'd expressed concern about that myself.
<br />
<br />Everyone has been so helpful to me with my endless lists of questions... I am sure they will be for you too. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />

 

[summer732]

I had a feeding tube put in at the same age as your daughter and right when I started my freshman year as well, so I can definitely relate.

I'm 27 now so this was about 13 years ago for me and I had it in for around 8 years (up until I received my transplant).

I'm not sure if much has changed, but I had a problem with my tube leaking. I'm sure they are made better now, but I chose to have the button put in that showed the least through my clothing. The flip side of that was that it was not flush to my skin and leaked a lot. Stomach acid does not smell good, but I think that I was the only one that noticed that unless you got really up close, like right to my stomach.

I usually did the tube feedings 5x a week and save 2 nights per week to myself. So if I wanted to go out late on a weekend or had to get up super early, I skipped it. The tube did help a lot in the beginning with putting on weight and getting me to where I needed to be next to my peers. I was 4'11" and 78 pounds when I had the tube put in, so very tiny!

You will learn to fit it in to the routine.

 

[summer732]

I had a feeding tube put in at the same age as your daughter and right when I started my freshman year as well, so I can definitely relate.

I'm 27 now so this was about 13 years ago for me and I had it in for around 8 years (up until I received my transplant).

I'm not sure if much has changed, but I had a problem with my tube leaking. I'm sure they are made better now, but I chose to have the button put in that showed the least through my clothing. The flip side of that was that it was not flush to my skin and leaked a lot. Stomach acid does not smell good, but I think that I was the only one that noticed that unless you got really up close, like right to my stomach.

I usually did the tube feedings 5x a week and save 2 nights per week to myself. So if I wanted to go out late on a weekend or had to get up super early, I skipped it. The tube did help a lot in the beginning with putting on weight and getting me to where I needed to be next to my peers. I was 4'11" and 78 pounds when I had the tube put in, so very tiny!

You will learn to fit it in to the routine.

 

[summer732]

I had a feeding tube put in at the same age as your daughter and right when I started my freshman year as well, so I can definitely relate.
<br />
<br />I'm 27 now so this was about 13 years ago for me and I had it in for around 8 years (up until I received my transplant).
<br />
<br />I'm not sure if much has changed, but I had a problem with my tube leaking. I'm sure they are made better now, but I chose to have the button put in that showed the least through my clothing. The flip side of that was that it was not flush to my skin and leaked a lot. Stomach acid does not smell good, but I think that I was the only one that noticed that unless you got really up close, like right to my stomach.
<br />
<br />I usually did the tube feedings 5x a week and save 2 nights per week to myself. So if I wanted to go out late on a weekend or had to get up super early, I skipped it. The tube did help a lot in the beginning with putting on weight and getting me to where I needed to be next to my peers. I was 4'11" and 78 pounds when I had the tube put in, so very tiny!
<br />
<br />You will learn to fit it in to the routine.

 

[Treewife]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>
had it in for around 8 years (up until I received my transplant). q]
That is the plan with Ashley... we are doing the tube so she can hold out for the transplant or at least be a candidate. Right now she needs the transplant according to her docs but would not be a good candidate due to nutrition/weight.

Summer732 - how much did you gain after the tube?

Ashley is pre-puberty right now and she and I think that the weight gain will bump her into real puberty. That is what happened with her sister when her lungs were funky and they put her on Prednisone.

 

[Treewife]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>
had it in for around 8 years (up until I received my transplant). q]
That is the plan with Ashley... we are doing the tube so she can hold out for the transplant or at least be a candidate. Right now she needs the transplant according to her docs but would not be a good candidate due to nutrition/weight.

Summer732 - how much did you gain after the tube?

Ashley is pre-puberty right now and she and I think that the weight gain will bump her into real puberty. That is what happened with her sister when her lungs were funky and they put her on Prednisone.

 

[Treewife]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>
<br />had it in for around 8 years (up until I received my transplant). q]
<br />That is the plan with Ashley... we are doing the tube so she can hold out for the transplant or at least be a candidate. Right now she needs the transplant according to her docs but would not be a good candidate due to nutrition/weight.
<br />
<br />Summer732 - how much did you gain after the tube?
<br />
<br />Ashley is pre-puberty right now and she and I think that the weight gain will bump her into real puberty. That is what happened with her sister when her lungs were funky and they put her on Prednisone.
<br />
<br />

 

[izemmom]

Hi Treewife,

My Emily was only 18 months old when she got her tube, and obviously that's going to be a very different experience in many ways than your daughter's will be. However, I wanted to say that we have had very positive results, and not nearly as many issues as I feared.

Once in a while, Emliy's tube will become disconnected at night, or a tube extension connector will break or something, and we'll have a leak to clean up, More often, but still pretty infrequently, Emily will cough to the point of throwing up in the middle of the night, and then we have THAT to deal with. When we're in the middle of a streak of this, it FEELS like it happens all the time, but, in reality, it doesn't happen very much at all.


Emily's tube really doesn't leak during the day, except for some occdaional seepage around the button site. This doesn't generally cause any problems. As for the stink, when she had the PEG, before she got her MicKEy, yes, there was an odor. I always felt that the long tube never emptied, so there was always a faint "sticky sweet vanilla flavored formula" scent, mixed with a faint vomit smell. It was never really very bad, and I honestly think I"m the only one who noticed it. Once she got the MicKey, it wasn't an issue. Now, I'll notice a faint "infection" type smell (I always wonder if other people can smell things like that, too, or if it's just me) from time to time, and that usually mean that I need to give her site a good scrub and use some triaminocolone cream.

The tube hasn't slowed her down one bit. We currently take 2 nights off each week, so if there is a sleep over or a late night event away from home, we just take off that night.

I hope you will have as positive an experience as we have had, and that the tube will be as great a heealth benefit for your daughter as it has been for mine!

 

[izemmom]

Hi Treewife,

My Emily was only 18 months old when she got her tube, and obviously that's going to be a very different experience in many ways than your daughter's will be. However, I wanted to say that we have had very positive results, and not nearly as many issues as I feared.

Once in a while, Emliy's tube will become disconnected at night, or a tube extension connector will break or something, and we'll have a leak to clean up, More often, but still pretty infrequently, Emily will cough to the point of throwing up in the middle of the night, and then we have THAT to deal with. When we're in the middle of a streak of this, it FEELS like it happens all the time, but, in reality, it doesn't happen very much at all.


Emily's tube really doesn't leak during the day, except for some occdaional seepage around the button site. This doesn't generally cause any problems. As for the stink, when she had the PEG, before she got her MicKEy, yes, there was an odor. I always felt that the long tube never emptied, so there was always a faint "sticky sweet vanilla flavored formula" scent, mixed with a faint vomit smell. It was never really very bad, and I honestly think I"m the only one who noticed it. Once she got the MicKey, it wasn't an issue. Now, I'll notice a faint "infection" type smell (I always wonder if other people can smell things like that, too, or if it's just me) from time to time, and that usually mean that I need to give her site a good scrub and use some triaminocolone cream.

The tube hasn't slowed her down one bit. We currently take 2 nights off each week, so if there is a sleep over or a late night event away from home, we just take off that night.

I hope you will have as positive an experience as we have had, and that the tube will be as great a heealth benefit for your daughter as it has been for mine!

 

[izemmom]

Hi Treewife,
<br />
<br />My Emily was only 18 months old when she got her tube, and obviously that's going to be a very different experience in many ways than your daughter's will be. However, I wanted to say that we have had very positive results, and not nearly as many issues as I feared.
<br />
<br />Once in a while, Emliy's tube will become disconnected at night, or a tube extension connector will break or something, and we'll have a leak to clean up, More often, but still pretty infrequently, Emily will cough to the point of throwing up in the middle of the night, and then we have THAT to deal with. When we're in the middle of a streak of this, it FEELS like it happens all the time, but, in reality, it doesn't happen very much at all.
<br />
<br />
<br />Emily's tube really doesn't leak during the day, except for some occdaional seepage around the button site. This doesn't generally cause any problems. As for the stink, when she had the PEG, before she got her MicKEy, yes, there was an odor. I always felt that the long tube never emptied, so there was always a faint "sticky sweet vanilla flavored formula" scent, mixed with a faint vomit smell. It was never really very bad, and I honestly think I"m the only one who noticed it. Once she got the MicKey, it wasn't an issue. Now, I'll notice a faint "infection" type smell (I always wonder if other people can smell things like that, too, or if it's just me) from time to time, and that usually mean that I need to give her site a good scrub and use some triaminocolone cream.
<br />
<br />The tube hasn't slowed her down one bit. We currently take 2 nights off each week, so if there is a sleep over or a late night event away from home, we just take off that night.
<br />
<br />I hope you will have as positive an experience as we have had, and that the tube will be as great a heealth benefit for your daughter as it has been for mine!

 

[izemmom]

Oh, regarding duration/speed of feeding, we had to adjust a bit with trial and error. Go with what your team tells you, then work from there. Emily is able (now) to handle about 90 ML/hour over 8 hours, but we've worked up to that.

 

[izemmom]

Oh, regarding duration/speed of feeding, we had to adjust a bit with trial and error. Go with what your team tells you, then work from there. Emily is able (now) to handle about 90 ML/hour over 8 hours, but we've worked up to that.

 

[izemmom]

Oh, regarding duration/speed of feeding, we had to adjust a bit with trial and error. Go with what your team tells you, then work from there. Emily is able (now) to handle about 90 ML/hour over 8 hours, but we've worked up to that.

 

[theLostMiler]

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

As for the stink, when she had the PEG, before she got her MicKEy, yes, there was an odor. I always felt that the long tube never emptied, so there was always a faint "sticky sweet vanilla flavored formula" scent, mixed with a faint vomit smell. </end quote></div>

Oh my, that is the PERFECT description, I smelt it too, with the long tube, but with the button I have had no odor issues that I can smell, even with granulation tissue/mucus issues.

 

[theLostMiler]

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

As for the stink, when she had the PEG, before she got her MicKEy, yes, there was an odor. I always felt that the long tube never emptied, so there was always a faint "sticky sweet vanilla flavored formula" scent, mixed with a faint vomit smell. </end quote>

Oh my, that is the PERFECT description, I smelt it too, with the long tube, but with the button I have had no odor issues that I can smell, even with granulation tissue/mucus issues.