Daugther getting feeding tube

[tammykrumrey]

My, almost 13 year old, is meeting with a surgeon on the 19th to discuss placement of her feeding tube (g-tube). She used to be at the 50% for weight and height, but has now fallen off the scale for both! She has only gained about 4 pounds in the past 3+ years. And her growth has pretty much hit a brick wall.

I am so excited to see how she will grow! She LOVES to play volleyball (she is a setter on a club volleyball team) and rec softball (she is a pitcher). How will her tube, if at all, interfere with her sports? I am sure that it won't, but not sure if there are some options that are better than others...and I am not sure what options are even available!

My guess is that the tube will do nothing but benefit her with her love of playing volleyball and softball. Now, because of her size, she has to work so hard to do what the rest of her teammates do with more ease. To pitch the ball, she has to put every ounce of her weight into the pitch to get the ball over the plate, simply because she is so tiny. Same with her overhand serves in volleyball. She is a great little player, and I am sure that when she grows, she will just become even stronger. People are usually surprised when she gets up to serve, or pitch, that she has as much power as she does! I tell her the best things come in small packages<img src="i/expressions/face-icon-small-smile.gif" border="0">

Any suggestions would be of great help. My older daughter doesn't have problems with weight gain, and although my nephew and his wife both have feeding tubes, they are not active sport players like Hannah is. And they are adults, who have had theirs for years...maybe things have changed since they got theirs!

 

[tammykrumrey]

My, almost 13 year old, is meeting with a surgeon on the 19th to discuss placement of her feeding tube (g-tube). She used to be at the 50% for weight and height, but has now fallen off the scale for both! She has only gained about 4 pounds in the past 3+ years. And her growth has pretty much hit a brick wall.

I am so excited to see how she will grow! She LOVES to play volleyball (she is a setter on a club volleyball team) and rec softball (she is a pitcher). How will her tube, if at all, interfere with her sports? I am sure that it won't, but not sure if there are some options that are better than others...and I am not sure what options are even available!

My guess is that the tube will do nothing but benefit her with her love of playing volleyball and softball. Now, because of her size, she has to work so hard to do what the rest of her teammates do with more ease. To pitch the ball, she has to put every ounce of her weight into the pitch to get the ball over the plate, simply because she is so tiny. Same with her overhand serves in volleyball. She is a great little player, and I am sure that when she grows, she will just become even stronger. People are usually surprised when she gets up to serve, or pitch, that she has as much power as she does! I tell her the best things come in small packages<img src="i/expressions/face-icon-small-smile.gif" border="0">

Any suggestions would be of great help. My older daughter doesn't have problems with weight gain, and although my nephew and his wife both have feeding tubes, they are not active sport players like Hannah is. And they are adults, who have had theirs for years...maybe things have changed since they got theirs!

 

[Mommafirst]

Hi Tammy,

Alyssa has had hers since she was 2.5. I'd strongly suggest that she get a button placed immediately, and consider an AMT mini one vs. the Mic-key button, as the AMT has a much lower profile and will hide better under her clothes.

Alyssa swam competitively last year with no issues. It does put a little bulge under her swimsuit, but if the suit is patterned and snug, its really hard to see. if you don't know to look for it.

It sounds like you are all in a good, positive frame of mind over this, so that should help you both a great deal. I know that 2 is very different from 12, but if you have questions, I'd be happy to help.

Heather

 

[Mommafirst]

Hi Tammy,

Alyssa has had hers since she was 2.5. I'd strongly suggest that she get a button placed immediately, and consider an AMT mini one vs. the Mic-key button, as the AMT has a much lower profile and will hide better under her clothes.

Alyssa swam competitively last year with no issues. It does put a little bulge under her swimsuit, but if the suit is patterned and snug, its really hard to see. if you don't know to look for it.

It sounds like you are all in a good, positive frame of mind over this, so that should help you both a great deal. I know that 2 is very different from 12, but if you have questions, I'd be happy to help.

Heather

 

[nmw0615]

I got my g-tube placed when I was in 6th grade and playing volleyball with a city rec league. During middle school, the only real problem I faced was making sure my stomach didn't collide with any hard body parts of my teammates.

Unfortunately, when I reached high school and the competitive volleyball started, I had to stop playing. I'm not sure how it would be for a setter, but I could not be a valuable team member when I had to always be aware of where arms and knees were, and I couldn't dive to save balls. The impact of the g-tube on the floor would have been horrible and caused a lot of bleeding. (I hit it once at an amusement park and the blood that followed looked like that out of a movie or TV show when someone is shot in the stomach.)

As a setter, she fortunately isn't in the position of always having to dive for the balls, which would be very helpful. There may even be a way to protect it enough that the other players couldn't do any damage if they accidentally run into each other.

As for the softball, the same thing about her stomach hitting the ground applies, but I don't see how pitching would create problems for her. Once the spot healed, I had full range of motion and could bed any way I could before without any problems.

 

[nmw0615]

I got my g-tube placed when I was in 6th grade and playing volleyball with a city rec league. During middle school, the only real problem I faced was making sure my stomach didn't collide with any hard body parts of my teammates.

Unfortunately, when I reached high school and the competitive volleyball started, I had to stop playing. I'm not sure how it would be for a setter, but I could not be a valuable team member when I had to always be aware of where arms and knees were, and I couldn't dive to save balls. The impact of the g-tube on the floor would have been horrible and caused a lot of bleeding. (I hit it once at an amusement park and the blood that followed looked like that out of a movie or TV show when someone is shot in the stomach.)

As a setter, she fortunately isn't in the position of always having to dive for the balls, which would be very helpful. There may even be a way to protect it enough that the other players couldn't do any damage if they accidentally run into each other.

As for the softball, the same thing about her stomach hitting the ground applies, but I don't see how pitching would create problems for her. Once the spot healed, I had full range of motion and could bed any way I could before without any problems.

 

[tammykrumrey]

Thanks for the help<img src="i/expressions/face-icon-small-smile.gif" border="0"> Heather, I am worried about the who swim suit issue. Her CF doc told her that she couldn't wear a bikini because of it and told her how cute one peice swim suits were. On the way home, I told her that she could wear a bikini, if she felt comfortable enough to do so. There is no reason not too, as long as she isn't rough housing, I would think. I will research the AMT mini one so I know what I am talking about<img src="i/expressions/face-icon-small-smile.gif" border="0">

nmw0615, thanks for the feedback. Yes, luckily she isn't one to be diving all over the place digging balls. My other daughter, with CF, plays libero, and is always diving to get them. I could see where that would be a concern. I am curious, since you were the same age as my Hannah when you got yours...how did you handle the growth? I mean, my Hannah is so tiny, and she is used to looking this way. She has been this little for YEARS!!! I can see problems with the way she sees herself when she starts to grow out of her clothes and stuff. She already complains that she has a fat belly. It is a little pot belly, after she eats. But by no means FAT! I am worried about how she will mentally handle growing. I keep telling her how she will get to shop at the same stores as her friends, finally! She is tired of fitting into size 7 kids clothes, when all her friends are wearing 'teenage' clothes. I keep trying to focus on the positives<img src="i/expressions/face-icon-small-smile.gif" border="0"> Did you have any problems with it?

Thanks again!

 

[tammykrumrey]

Thanks for the help<img src="i/expressions/face-icon-small-smile.gif" border="0"> Heather, I am worried about the who swim suit issue. Her CF doc told her that she couldn't wear a bikini because of it and told her how cute one peice swim suits were. On the way home, I told her that she could wear a bikini, if she felt comfortable enough to do so. There is no reason not too, as long as she isn't rough housing, I would think. I will research the AMT mini one so I know what I am talking about<img src="i/expressions/face-icon-small-smile.gif" border="0">

nmw0615, thanks for the feedback. Yes, luckily she isn't one to be diving all over the place digging balls. My other daughter, with CF, plays libero, and is always diving to get them. I could see where that would be a concern. I am curious, since you were the same age as my Hannah when you got yours...how did you handle the growth? I mean, my Hannah is so tiny, and she is used to looking this way. She has been this little for YEARS!!! I can see problems with the way she sees herself when she starts to grow out of her clothes and stuff. She already complains that she has a fat belly. It is a little pot belly, after she eats. But by no means FAT! I am worried about how she will mentally handle growing. I keep telling her how she will get to shop at the same stores as her friends, finally! She is tired of fitting into size 7 kids clothes, when all her friends are wearing 'teenage' clothes. I keep trying to focus on the positives<img src="i/expressions/face-icon-small-smile.gif" border="0"> Did you have any problems with it?

Thanks again!

 

[MiahsMommy]

My daughters had hers for about 4 months now. Although it took a while for it to fully heal, we absolutely love it. I would also recommend getting a button as well. Hers is small and low profile. It's rubber material. I would also tape it down when not being used. This will prevent from it being tugged. Our daughter is on continuous feeds so the tape is there at all times. I wish someone would of told me the tape tip, maybe it wouldn't have taken as long to heal! Shes always been curious and likes to pull on it. I'm sure your daughter won't have this problem since she isn't a baby lol! Anyways,, good luck.. and remember button and tape! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MiahsMommy]

My daughters had hers for about 4 months now. Although it took a while for it to fully heal, we absolutely love it. I would also recommend getting a button as well. Hers is small and low profile. It's rubber material. I would also tape it down when not being used. This will prevent from it being tugged. Our daughter is on continuous feeds so the tape is there at all times. I wish someone would of told me the tape tip, maybe it wouldn't have taken as long to heal! Shes always been curious and likes to pull on it. I'm sure your daughter won't have this problem since she isn't a baby lol! Anyways,, good luck.. and remember button and tape! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mommafirst]

Tammy -- I don't know why the doctor said she *couldn't* wear a bikini. The bottom line is that she may not *want* to wear one, but no one will keep her from doing so. If you have extra tegaderm around from a picc line, or a similar large waterproof bandage, she can cover the button and wear a bikini if she wants coverage but her old bathing suits.

 

[Mommafirst]

Tammy -- I don't know why the doctor said she *couldn't* wear a bikini. The bottom line is that she may not *want* to wear one, but no one will keep her from doing so. If you have extra tegaderm around from a picc line, or a similar large waterproof bandage, she can cover the button and wear a bikini if she wants coverage but her old bathing suits.

 

[Mommafirst]

FWIW, though, even at age 6, Alyssa has declared she can't wear a bikini because she doesn't want anyone to see her tube. :/

 

[Mommafirst]

FWIW, though, even at age 6, Alyssa has declared she can't wear a bikini because she doesn't want anyone to see her tube. :/

 

[hmw]

Emily has a MicKey, which sticks out farther than an AMT would, and I'd definitely go for the AMT or a bard-compatible type button given a choice. Discuss the active lifestyle your daughter has when making the choice. If you dont have the support of the dr you are working with go to another. AMT and especially Bard-type are pretty much flat against the skin. What I was going to say about the MicKey though was Emily was kneed in the belly and forcibly slammed face/belly down onto a trampoline one day by a kid who outweighed her by close to 100 pounds- completely by accident but still- and aside from some soreness for a little while she was FINE. it was not gory or bloody or anything else. Nothing has ever made that thing bleed aside from some granulation tissue when it was messed with- and any handling of that can make it bleed but that is completely treatable! Anyway, Maybe Emily got lucky when slammed around, but not every bit of physical contact is necessarily going to cause damage. They do on occasion get pulled out (that hasn't happened to us but has with many others) but that won't necessarily or even usually cause bleeding either. You always have a spare kit at home in case that happens.

I would like to add- we did not want Emily to have a long PEG placed first as it was not medically necessary. Many drs will want that first but their preference or 'that's what they have always done' was not a good enough reason for me. I only wanted that if there was NEED, and there is not. So instead of going through GI, we went through ped surgery, where we could get the button.

 

[hmw]

Emily has a MicKey, which sticks out farther than an AMT would, and I'd definitely go for the AMT or a bard-compatible type button given a choice. Discuss the active lifestyle your daughter has when making the choice. If you dont have the support of the dr you are working with go to another. AMT and especially Bard-type are pretty much flat against the skin. What I was going to say about the MicKey though was Emily was kneed in the belly and forcibly slammed face/belly down onto a trampoline one day by a kid who outweighed her by close to 100 pounds- completely by accident but still- and aside from some soreness for a little while she was FINE. it was not gory or bloody or anything else. Nothing has ever made that thing bleed aside from some granulation tissue when it was messed with- and any handling of that can make it bleed but that is completely treatable! Anyway, Maybe Emily got lucky when slammed around, but not every bit of physical contact is necessarily going to cause damage. They do on occasion get pulled out (that hasn't happened to us but has with many others) but that won't necessarily or even usually cause bleeding either. You always have a spare kit at home in case that happens.

I would like to add- we did not want Emily to have a long PEG placed first as it was not medically necessary. Many drs will want that first but their preference or 'that's what they have always done' was not a good enough reason for me. I only wanted that if there was NEED, and there is not. So instead of going through GI, we went through ped surgery, where we could get the button.

 

[nmw0615]

I had a few issues with it, mostly with the bit of a potbelly. What really helped me was when I started to grow, my mom made it a very special day when we got to buy new clothes. We did a girl's day and got coffee, did lunch and shopped.

As for the pot belly issue, I think what helped me most was when I'd mention something about it, my mom would never deny it and tell me I was wrong and completely skinny. It's obvious there's a bit of a belly there. Instead, she looked up all the different types of shirts we could buy on our next outing that would make it a little harder to see. We'd spend quite a while looking at fashion magazines, reading the articles about what styles look good on what types of bodies and then we'd go buy some cool shirts that would hide it. My mom was big on working with me to accept my "flaws" and find ways to make myself look and feel good about them.

 

[nmw0615]

I had a few issues with it, mostly with the bit of a potbelly. What really helped me was when I started to grow, my mom made it a very special day when we got to buy new clothes. We did a girl's day and got coffee, did lunch and shopped.

As for the pot belly issue, I think what helped me most was when I'd mention something about it, my mom would never deny it and tell me I was wrong and completely skinny. It's obvious there's a bit of a belly there. Instead, she looked up all the different types of shirts we could buy on our next outing that would make it a little harder to see. We'd spend quite a while looking at fashion magazines, reading the articles about what styles look good on what types of bodies and then we'd go buy some cool shirts that would hide it. My mom was big on working with me to accept my "flaws" and find ways to make myself look and feel good about them.

 

[JennyCoulon]

I believe when the g-button is first placed they use a Bard which is not one that can be changed at home b/c it doesn't have a deflatable balloon. Once the site is healed, etc I believe you will then be able to decide which button you would like. With our oldest who is now 12 and got his button when he was 5 we went with the Mini. The Mini looks very similar to the Bard as it is flat, it does have the deflatable balloon so you will be able to switch it out at home and the feeding tube locks in like the Mickey. When he got his placed his was an 18 french, 3.5 button. They decided with his previous surgeries and his belly inside looking like spiderwebs that they wouldn't be able to place a bigger one in the future so they gave him a bigger size. He plays soccer, runs around, swims, etc. The one thing that we stuggled with as he has gotten older is his self-confidence. Last year he wanted to wear a hoodie all of the time to "hide" it. He would wear this even when it was 100 degrees outside. We tried to find a solution as to how to make it not so noticable. He was wearing a big bandaid on it to keep it closer to his skin. We had to sit down and talk to him and tell him that this is "saving his life". As much as he hates it he has to understand that this is part of him and in all reality might be for the rest of his life. After this talk things changed. He didn't have to wear a hoodie any longer, he would go to school in a t-shirt and nothing covering it. I was so proud of him for being who he is. We came across some Tagaderm film like what goes over a PICC line. He puts this over his button sometimes if he is wearing a "smaller" t-shirt. It isn't tough on the skin as the bandaids and it does the same job. This is something that we now get with his monthly order along with his other g-button supplies. Hope this helps, and don't hesitate to ask any questions that you might have. This will be a transition for both her and your family but it is well worth it. My son went from being in the 5th % to between the 25th & 50th % for his weight. I will also warn you that she will be in a lot of pain afterwards to make sure they are keeping her comfortable. Thanks and good luck...
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[JennyCoulon]

I believe when the g-button is first placed they use a Bard which is not one that can be changed at home b/c it doesn't have a deflatable balloon. Once the site is healed, etc I believe you will then be able to decide which button you would like. With our oldest who is now 12 and got his button when he was 5 we went with the Mini. The Mini looks very similar to the Bard as it is flat, it does have the deflatable balloon so you will be able to switch it out at home and the feeding tube locks in like the Mickey. When he got his placed his was an 18 french, 3.5 button. They decided with his previous surgeries and his belly inside looking like spiderwebs that they wouldn't be able to place a bigger one in the future so they gave him a bigger size. He plays soccer, runs around, swims, etc. The one thing that we stuggled with as he has gotten older is his self-confidence. Last year he wanted to wear a hoodie all of the time to "hide" it. He would wear this even when it was 100 degrees outside. We tried to find a solution as to how to make it not so noticable. He was wearing a big bandaid on it to keep it closer to his skin. We had to sit down and talk to him and tell him that this is "saving his life". As much as he hates it he has to understand that this is part of him and in all reality might be for the rest of his life. After this talk things changed. He didn't have to wear a hoodie any longer, he would go to school in a t-shirt and nothing covering it. I was so proud of him for being who he is. We came across some Tagaderm film like what goes over a PICC line. He puts this over his button sometimes if he is wearing a "smaller" t-shirt. It isn't tough on the skin as the bandaids and it does the same job. This is something that we now get with his monthly order along with his other g-button supplies. Hope this helps, and don't hesitate to ask any questions that you might have. This will be a transition for both her and your family but it is well worth it. My son went from being in the 5th % to between the 25th & 50th % for his weight. I will also warn you that she will be in a lot of pain afterwards to make sure they are keeping her comfortable. Thanks and good luck...
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