Feeding Tube?

C

CFHockeyMom

New member
Well, for some time now Sean's Dr. has been "mentioning" a feeding tube. He's been working hard to gain weight and has done a good job but he's still at the bottom of the charts.

His Dr. thinks it's time. She's given him another 4 weeks to try and gain 2 pounds but honestly I think she's made up her mind. Unfortunately, Sean and I haven't. I know that it's probably in his best interest but being 13 makes it that much harder for him.

So, I'm looking for some positive feedback from those of you that have been through this. Also, can you please tell me what exactly is involved on a day to day basis.

Thanks!
 
C

CFHockeyMom

New member
Well, for some time now Sean's Dr. has been "mentioning" a feeding tube. He's been working hard to gain weight and has done a good job but he's still at the bottom of the charts.

His Dr. thinks it's time. She's given him another 4 weeks to try and gain 2 pounds but honestly I think she's made up her mind. Unfortunately, Sean and I haven't. I know that it's probably in his best interest but being 13 makes it that much harder for him.

So, I'm looking for some positive feedback from those of you that have been through this. Also, can you please tell me what exactly is involved on a day to day basis.

Thanks!
 
C

CFHockeyMom

New member
Well, for some time now Sean's Dr. has been "mentioning" a feeding tube. He's been working hard to gain weight and has done a good job but he's still at the bottom of the charts.

His Dr. thinks it's time. She's given him another 4 weeks to try and gain 2 pounds but honestly I think she's made up her mind. Unfortunately, Sean and I haven't. I know that it's probably in his best interest but being 13 makes it that much harder for him.

So, I'm looking for some positive feedback from those of you that have been through this. Also, can you please tell me what exactly is involved on a day to day basis.

Thanks!
 
C

CFHockeyMom

New member
Well, for some time now Sean's Dr. has been "mentioning" a feeding tube. He's been working hard to gain weight and has done a good job but he's still at the bottom of the charts.

His Dr. thinks it's time. She's given him another 4 weeks to try and gain 2 pounds but honestly I think she's made up her mind. Unfortunately, Sean and I haven't. I know that it's probably in his best interest but being 13 makes it that much harder for him.

So, I'm looking for some positive feedback from those of you that have been through this. Also, can you please tell me what exactly is involved on a day to day basis.

Thanks!
 
C

CFHockeyMom

New member
Well, for some time now Sean's Dr. has been "mentioning" a feeding tube. He's been working hard to gain weight and has done a good job but he's still at the bottom of the charts.
<br />
<br />His Dr. thinks it's time. She's given him another 4 weeks to try and gain 2 pounds but honestly I think she's made up her mind. Unfortunately, Sean and I haven't. I know that it's probably in his best interest but being 13 makes it that much harder for him.
<br />
<br />So, I'm looking for some positive feedback from those of you that have been through this. Also, can you please tell me what exactly is involved on a day to day basis.
<br />
<br />Thanks!
 
M

Mommafirst

Guest
I am happy to discuss this as detailed if you wish. My daughter is only 3, but I have been through those doctors appointments where they are sooo darned concerned about the weight, I've gotten the call that says "its time" you need to come in just to discuss it, and we've been living with the tube for the past 8 months.

I've also seen the transformation that the tube has made for Alyssa. She went from off the charts low to the 70th percentile for BMI. She is a transformed person in just 8 months and now we are working on weaning her from the tube. It does NOT have to be a permanant thing, it can merely be a tool to help him put on some weight and get back the ground he needs to keep himself healthy.

There is no question that this was the hardest and most emotional decision I've ever made, and while I don't like the tube very much, I am thankful for making the right decision.

The surgery is pretty simple. The button is small, but does show a bump in a shirt, but so long as my daughter wears loose clothing, its really not all that obvious.

Day to day care is pretty simple too. I just hook up an extension to the button and add the pump with milk when she goes to bed each night. It took awhile to figure out how to keep everything connected all night, but there are plenty of good tricks that can be shared if this is the way you go.

The button itself doesn't impact my daughter's ability to do anything. She swims in the lake. She dances. She can live life normally, we just have to pay attention to the button and if it comes out we have to get it back in quickly otherwise the skin will start to close and a new surgery could be necessary.

I can send you pictures of the button and anything else if you like. I have a good link to a site that makes stuffed bunnies with g-tubes to show kids how they work, but your son is probably too old for that. I would think that you and your son will have a lot of questions before you come to the right decision for you , if I can help in anyway please let me know.
 
M

Mommafirst

Guest
I am happy to discuss this as detailed if you wish. My daughter is only 3, but I have been through those doctors appointments where they are sooo darned concerned about the weight, I've gotten the call that says "its time" you need to come in just to discuss it, and we've been living with the tube for the past 8 months.

I've also seen the transformation that the tube has made for Alyssa. She went from off the charts low to the 70th percentile for BMI. She is a transformed person in just 8 months and now we are working on weaning her from the tube. It does NOT have to be a permanant thing, it can merely be a tool to help him put on some weight and get back the ground he needs to keep himself healthy.

There is no question that this was the hardest and most emotional decision I've ever made, and while I don't like the tube very much, I am thankful for making the right decision.

The surgery is pretty simple. The button is small, but does show a bump in a shirt, but so long as my daughter wears loose clothing, its really not all that obvious.

Day to day care is pretty simple too. I just hook up an extension to the button and add the pump with milk when she goes to bed each night. It took awhile to figure out how to keep everything connected all night, but there are plenty of good tricks that can be shared if this is the way you go.

The button itself doesn't impact my daughter's ability to do anything. She swims in the lake. She dances. She can live life normally, we just have to pay attention to the button and if it comes out we have to get it back in quickly otherwise the skin will start to close and a new surgery could be necessary.

I can send you pictures of the button and anything else if you like. I have a good link to a site that makes stuffed bunnies with g-tubes to show kids how they work, but your son is probably too old for that. I would think that you and your son will have a lot of questions before you come to the right decision for you , if I can help in anyway please let me know.
 
M

Mommafirst

Guest
I am happy to discuss this as detailed if you wish. My daughter is only 3, but I have been through those doctors appointments where they are sooo darned concerned about the weight, I've gotten the call that says "its time" you need to come in just to discuss it, and we've been living with the tube for the past 8 months.

I've also seen the transformation that the tube has made for Alyssa. She went from off the charts low to the 70th percentile for BMI. She is a transformed person in just 8 months and now we are working on weaning her from the tube. It does NOT have to be a permanant thing, it can merely be a tool to help him put on some weight and get back the ground he needs to keep himself healthy.

There is no question that this was the hardest and most emotional decision I've ever made, and while I don't like the tube very much, I am thankful for making the right decision.

The surgery is pretty simple. The button is small, but does show a bump in a shirt, but so long as my daughter wears loose clothing, its really not all that obvious.

Day to day care is pretty simple too. I just hook up an extension to the button and add the pump with milk when she goes to bed each night. It took awhile to figure out how to keep everything connected all night, but there are plenty of good tricks that can be shared if this is the way you go.

The button itself doesn't impact my daughter's ability to do anything. She swims in the lake. She dances. She can live life normally, we just have to pay attention to the button and if it comes out we have to get it back in quickly otherwise the skin will start to close and a new surgery could be necessary.

I can send you pictures of the button and anything else if you like. I have a good link to a site that makes stuffed bunnies with g-tubes to show kids how they work, but your son is probably too old for that. I would think that you and your son will have a lot of questions before you come to the right decision for you , if I can help in anyway please let me know.
 
M

Mommafirst

Guest
I am happy to discuss this as detailed if you wish. My daughter is only 3, but I have been through those doctors appointments where they are sooo darned concerned about the weight, I've gotten the call that says "its time" you need to come in just to discuss it, and we've been living with the tube for the past 8 months.

I've also seen the transformation that the tube has made for Alyssa. She went from off the charts low to the 70th percentile for BMI. She is a transformed person in just 8 months and now we are working on weaning her from the tube. It does NOT have to be a permanant thing, it can merely be a tool to help him put on some weight and get back the ground he needs to keep himself healthy.

There is no question that this was the hardest and most emotional decision I've ever made, and while I don't like the tube very much, I am thankful for making the right decision.

The surgery is pretty simple. The button is small, but does show a bump in a shirt, but so long as my daughter wears loose clothing, its really not all that obvious.

Day to day care is pretty simple too. I just hook up an extension to the button and add the pump with milk when she goes to bed each night. It took awhile to figure out how to keep everything connected all night, but there are plenty of good tricks that can be shared if this is the way you go.

The button itself doesn't impact my daughter's ability to do anything. She swims in the lake. She dances. She can live life normally, we just have to pay attention to the button and if it comes out we have to get it back in quickly otherwise the skin will start to close and a new surgery could be necessary.

I can send you pictures of the button and anything else if you like. I have a good link to a site that makes stuffed bunnies with g-tubes to show kids how they work, but your son is probably too old for that. I would think that you and your son will have a lot of questions before you come to the right decision for you , if I can help in anyway please let me know.
 
M

Mommafirst

Guest
I am happy to discuss this as detailed if you wish. My daughter is only 3, but I have been through those doctors appointments where they are sooo darned concerned about the weight, I've gotten the call that says "its time" you need to come in just to discuss it, and we've been living with the tube for the past 8 months.
<br />
<br />I've also seen the transformation that the tube has made for Alyssa. She went from off the charts low to the 70th percentile for BMI. She is a transformed person in just 8 months and now we are working on weaning her from the tube. It does NOT have to be a permanant thing, it can merely be a tool to help him put on some weight and get back the ground he needs to keep himself healthy.
<br />
<br />There is no question that this was the hardest and most emotional decision I've ever made, and while I don't like the tube very much, I am thankful for making the right decision.
<br />
<br />The surgery is pretty simple. The button is small, but does show a bump in a shirt, but so long as my daughter wears loose clothing, its really not all that obvious.
<br />
<br />Day to day care is pretty simple too. I just hook up an extension to the button and add the pump with milk when she goes to bed each night. It took awhile to figure out how to keep everything connected all night, but there are plenty of good tricks that can be shared if this is the way you go.
<br />
<br />The button itself doesn't impact my daughter's ability to do anything. She swims in the lake. She dances. She can live life normally, we just have to pay attention to the button and if it comes out we have to get it back in quickly otherwise the skin will start to close and a new surgery could be necessary.
<br />
<br />I can send you pictures of the button and anything else if you like. I have a good link to a site that makes stuffed bunnies with g-tubes to show kids how they work, but your son is probably too old for that. I would think that you and your son will have a lot of questions before you come to the right decision for you , if I can help in anyway please let me know.
<br />
 
J

just1more

New member
I'll try to post more later, but in the meantime check out the posts in the Adult Forum by JBrandonAW.

She is a early-20's woman that just got a G-tube a few weeks ago. She might be able to give you some recent first-hand thoughts on the decision process. Especially since your son is an early teen will have some of the same concerns as she likely did.
 
J

just1more

New member
I'll try to post more later, but in the meantime check out the posts in the Adult Forum by JBrandonAW.

She is a early-20's woman that just got a G-tube a few weeks ago. She might be able to give you some recent first-hand thoughts on the decision process. Especially since your son is an early teen will have some of the same concerns as she likely did.
 
J

just1more

New member
I'll try to post more later, but in the meantime check out the posts in the Adult Forum by JBrandonAW.

She is a early-20's woman that just got a G-tube a few weeks ago. She might be able to give you some recent first-hand thoughts on the decision process. Especially since your son is an early teen will have some of the same concerns as she likely did.
 
J

just1more

New member
I'll try to post more later, but in the meantime check out the posts in the Adult Forum by JBrandonAW.

She is a early-20's woman that just got a G-tube a few weeks ago. She might be able to give you some recent first-hand thoughts on the decision process. Especially since your son is an early teen will have some of the same concerns as she likely did.
 
J

just1more

New member
I'll try to post more later, but in the meantime check out the posts in the Adult Forum by JBrandonAW.
<br />
<br />She is a early-20's woman that just got a G-tube a few weeks ago. She might be able to give you some recent first-hand thoughts on the decision process. Especially since your son is an early teen will have some of the same concerns as she likely did.
 
M

MumUk

New member
Hello - I am a Mum to a 14 year old daughter with CF in the UK. I have recently joined your site-I hope you don't mind me hopping on to your board from across the pond! My daughter is currently waiting to go into hospital for a feeding tube and our community nurse has been to our home today to describe the procedure and show us the tubing, valve etc that will be involved. The response from 'MommaFirst' was most reassuring as it is rather an unknown quantity for us. Whilst most of my fears/concerns have been largely adressed by the hospital, it is still really comforting to hear from another Mum how positive the tube has been, and to let another parent know that we are also awaiting the same procedure.

I have met a 15 year old girl with a tube in place and she has what is known here as a 'Mic-key' button-a bit like the valve on a lilo!- through which the feeds are given- don't know if this is the same in the US? Apparently, we will have a tube for 6 months whilst the site heals, and then a button thereafter. It as, as the previous post stated, entirely reversible and not too much of a problem to maintain. The young lady I met was very much at ease with the feeds and(like the last post's daughter)had had the gastrostomy since she was 3 years old.

I think that the need for tube feeding can be an issue particularly through the teen years due to the extra pressure placed on the body whilst growing, and just a general boost for any CF person who finds weight an issue.We have struggled to accept that it was necessary but think my fears have been allayed somewhat by our CFteam and the information gained from both this and the Uk CF sites. Thankyou, and I hope all is well with your children and that you find the procedure of real benefit. Apparently, It helps with lung function and general overall energy levels - can only be a good thing surely? Take care and hope you don't mind me butting in!

Love from England to you - MumUk xxx
 
M

MumUk

New member
Hello - I am a Mum to a 14 year old daughter with CF in the UK. I have recently joined your site-I hope you don't mind me hopping on to your board from across the pond! My daughter is currently waiting to go into hospital for a feeding tube and our community nurse has been to our home today to describe the procedure and show us the tubing, valve etc that will be involved. The response from 'MommaFirst' was most reassuring as it is rather an unknown quantity for us. Whilst most of my fears/concerns have been largely adressed by the hospital, it is still really comforting to hear from another Mum how positive the tube has been, and to let another parent know that we are also awaiting the same procedure.

I have met a 15 year old girl with a tube in place and she has what is known here as a 'Mic-key' button-a bit like the valve on a lilo!- through which the feeds are given- don't know if this is the same in the US? Apparently, we will have a tube for 6 months whilst the site heals, and then a button thereafter. It as, as the previous post stated, entirely reversible and not too much of a problem to maintain. The young lady I met was very much at ease with the feeds and(like the last post's daughter)had had the gastrostomy since she was 3 years old.

I think that the need for tube feeding can be an issue particularly through the teen years due to the extra pressure placed on the body whilst growing, and just a general boost for any CF person who finds weight an issue.We have struggled to accept that it was necessary but think my fears have been allayed somewhat by our CFteam and the information gained from both this and the Uk CF sites. Thankyou, and I hope all is well with your children and that you find the procedure of real benefit. Apparently, It helps with lung function and general overall energy levels - can only be a good thing surely? Take care and hope you don't mind me butting in!

Love from England to you - MumUk xxx
 
M

MumUk

New member
Hello - I am a Mum to a 14 year old daughter with CF in the UK. I have recently joined your site-I hope you don't mind me hopping on to your board from across the pond! My daughter is currently waiting to go into hospital for a feeding tube and our community nurse has been to our home today to describe the procedure and show us the tubing, valve etc that will be involved. The response from 'MommaFirst' was most reassuring as it is rather an unknown quantity for us. Whilst most of my fears/concerns have been largely adressed by the hospital, it is still really comforting to hear from another Mum how positive the tube has been, and to let another parent know that we are also awaiting the same procedure.

I have met a 15 year old girl with a tube in place and she has what is known here as a 'Mic-key' button-a bit like the valve on a lilo!- through which the feeds are given- don't know if this is the same in the US? Apparently, we will have a tube for 6 months whilst the site heals, and then a button thereafter. It as, as the previous post stated, entirely reversible and not too much of a problem to maintain. The young lady I met was very much at ease with the feeds and(like the last post's daughter)had had the gastrostomy since she was 3 years old.

I think that the need for tube feeding can be an issue particularly through the teen years due to the extra pressure placed on the body whilst growing, and just a general boost for any CF person who finds weight an issue.We have struggled to accept that it was necessary but think my fears have been allayed somewhat by our CFteam and the information gained from both this and the Uk CF sites. Thankyou, and I hope all is well with your children and that you find the procedure of real benefit. Apparently, It helps with lung function and general overall energy levels - can only be a good thing surely? Take care and hope you don't mind me butting in!

Love from England to you - MumUk xxx
 
M

MumUk

New member
Hello - I am a Mum to a 14 year old daughter with CF in the UK. I have recently joined your site-I hope you don't mind me hopping on to your board from across the pond! My daughter is currently waiting to go into hospital for a feeding tube and our community nurse has been to our home today to describe the procedure and show us the tubing, valve etc that will be involved. The response from 'MommaFirst' was most reassuring as it is rather an unknown quantity for us. Whilst most of my fears/concerns have been largely adressed by the hospital, it is still really comforting to hear from another Mum how positive the tube has been, and to let another parent know that we are also awaiting the same procedure.

I have met a 15 year old girl with a tube in place and she has what is known here as a 'Mic-key' button-a bit like the valve on a lilo!- through which the feeds are given- don't know if this is the same in the US? Apparently, we will have a tube for 6 months whilst the site heals, and then a button thereafter. It as, as the previous post stated, entirely reversible and not too much of a problem to maintain. The young lady I met was very much at ease with the feeds and(like the last post's daughter)had had the gastrostomy since she was 3 years old.

I think that the need for tube feeding can be an issue particularly through the teen years due to the extra pressure placed on the body whilst growing, and just a general boost for any CF person who finds weight an issue.We have struggled to accept that it was necessary but think my fears have been allayed somewhat by our CFteam and the information gained from both this and the Uk CF sites. Thankyou, and I hope all is well with your children and that you find the procedure of real benefit. Apparently, It helps with lung function and general overall energy levels - can only be a good thing surely? Take care and hope you don't mind me butting in!

Love from England to you - MumUk xxx
 
M

MumUk

New member
Hello - I am a Mum to a 14 year old daughter with CF in the UK. I have recently joined your site-I hope you don't mind me hopping on to your board from across the pond! My daughter is currently waiting to go into hospital for a feeding tube and our community nurse has been to our home today to describe the procedure and show us the tubing, valve etc that will be involved. The response from 'MommaFirst' was most reassuring as it is rather an unknown quantity for us. Whilst most of my fears/concerns have been largely adressed by the hospital, it is still really comforting to hear from another Mum how positive the tube has been, and to let another parent know that we are also awaiting the same procedure.
<br />
<br /> I have met a 15 year old girl with a tube in place and she has what is known here as a 'Mic-key' button-a bit like the valve on a lilo!- through which the feeds are given- don't know if this is the same in the US? Apparently, we will have a tube for 6 months whilst the site heals, and then a button thereafter. It as, as the previous post stated, entirely reversible and not too much of a problem to maintain. The young lady I met was very much at ease with the feeds and(like the last post's daughter)had had the gastrostomy since she was 3 years old.
<br />
<br />I think that the need for tube feeding can be an issue particularly through the teen years due to the extra pressure placed on the body whilst growing, and just a general boost for any CF person who finds weight an issue.We have struggled to accept that it was necessary but think my fears have been allayed somewhat by our CFteam and the information gained from both this and the Uk CF sites. Thankyou, and I hope all is well with your children and that you find the procedure of real benefit. Apparently, It helps with lung function and general overall energy levels - can only be a good thing surely? Take care and hope you don't mind me butting in!
<br />
<br />Love from England to you - MumUk xxx
 
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