Feeding tube...

A

ashmomo

New member
I know there have been many posts about this, but I am looking to get this all in one spot so I can show my fiance.

My daughter is 14 months old. She has been sick 'most' of her life. 2 hospital admits already after spending the first 2 1/2 mos in to begin with from bowel surgery.

She had a 2 week stay at the end of May, one month ago. She gained 2 pounds! That was great. She left at about 18 lbs 1 oz.

We just went to her 1 year appt (late) and she was down to 17 lbs 11 oz and she has been coughing again for the past week. We have to go to clinic tomorrow morning. I am expecting to hear again about a feeding tube, as it was already brought up before her last hospital stay.
My fiance wants pretty much nothing to do with the whole issue. It makes me so sad that I have no support from him when it comes to things like this. He told me I could put the tube in her cuz I am the boss when it comes to the kids health, but he wasn't going to agree. It broke my heart <img src="i/expressions/face-icon-small-blush.gif" border="0">( I can't even talk to him about it.

I would like if I could get maybe some good stories about your child's condition BEFORE and AFTER they got a tube...experience w/ the tube (good and bad)...especially if there are any Father's oppinions out there that might help him to take this step. I really don't want this either, but Jordin's condition is very different than our 5 year old's condition has ever been and I think we may have to consider this for Jordin.

Also wondering, WHEN you made the choice that your child NEEDED a tube...

Has anyone out there ever regretted getting a tube for their child???

Thanks for all your input on this...it is greatly appreciated <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
I know there have been many posts about this, but I am looking to get this all in one spot so I can show my fiance.

My daughter is 14 months old. She has been sick 'most' of her life. 2 hospital admits already after spending the first 2 1/2 mos in to begin with from bowel surgery.

She had a 2 week stay at the end of May, one month ago. She gained 2 pounds! That was great. She left at about 18 lbs 1 oz.

We just went to her 1 year appt (late) and she was down to 17 lbs 11 oz and she has been coughing again for the past week. We have to go to clinic tomorrow morning. I am expecting to hear again about a feeding tube, as it was already brought up before her last hospital stay.
My fiance wants pretty much nothing to do with the whole issue. It makes me so sad that I have no support from him when it comes to things like this. He told me I could put the tube in her cuz I am the boss when it comes to the kids health, but he wasn't going to agree. It broke my heart <img src="i/expressions/face-icon-small-blush.gif" border="0">( I can't even talk to him about it.

I would like if I could get maybe some good stories about your child's condition BEFORE and AFTER they got a tube...experience w/ the tube (good and bad)...especially if there are any Father's oppinions out there that might help him to take this step. I really don't want this either, but Jordin's condition is very different than our 5 year old's condition has ever been and I think we may have to consider this for Jordin.

Also wondering, WHEN you made the choice that your child NEEDED a tube...

Has anyone out there ever regretted getting a tube for their child???

Thanks for all your input on this...it is greatly appreciated <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
I know there have been many posts about this, but I am looking to get this all in one spot so I can show my fiance.
<br />
<br />My daughter is 14 months old. She has been sick 'most' of her life. 2 hospital admits already after spending the first 2 1/2 mos in to begin with from bowel surgery.
<br />
<br />She had a 2 week stay at the end of May, one month ago. She gained 2 pounds! That was great. She left at about 18 lbs 1 oz.
<br />
<br />We just went to her 1 year appt (late) and she was down to 17 lbs 11 oz and she has been coughing again for the past week. We have to go to clinic tomorrow morning. I am expecting to hear again about a feeding tube, as it was already brought up before her last hospital stay.
<br />My fiance wants pretty much nothing to do with the whole issue. It makes me so sad that I have no support from him when it comes to things like this. He told me I could put the tube in her cuz I am the boss when it comes to the kids health, but he wasn't going to agree. It broke my heart <img src="i/expressions/face-icon-small-blush.gif" border="0">( I can't even talk to him about it.
<br />
<br />I would like if I could get maybe some good stories about your child's condition BEFORE and AFTER they got a tube...experience w/ the tube (good and bad)...especially if there are any Father's oppinions out there that might help him to take this step. I really don't want this either, but Jordin's condition is very different than our 5 year old's condition has ever been and I think we may have to consider this for Jordin.
<br />
<br />Also wondering, WHEN you made the choice that your child NEEDED a tube...
<br />
<br />Has anyone out there ever regretted getting a tube for their child???
<br />
<br />Thanks for all your input on this...it is greatly appreciated <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
M

Mommafirst

Guest
I remember how hard it was to make this decision. My husband and I were not on the same page about it for a LONG time. He was insistent that "they" couldn't make us do this and he refused to participate. Just because you are a team in raising your child, doesn't mean you are always going to be at the same point in the process of acceptance right away. It took a long time for my husband to come to understand the needs of CF and to understand why the doctor thought the tube was important. He is now an active part of that process and is a big believer in the need for the tube. In fact, I'm the one that keeps pushing us to wean her while my husband insists that it does more good right now and we shouldn't get rid of it.

Alyssa was about Jordin's age when her weight became a problem, and the team first brought up the idea of the tube. We asked for more time. The team gave it to us and we tried everything to get weight on her. By the time she was 2.5, she weighed 22 pounds and was looking very gaunt. The doctors started pressing again, and we decided it was time.

She is now 4 and a half, its been almost 2 years since we got the tube. She weights 34 pounds and is doing much better. She cannot hold her weight, when we wean temporarily she loses rapidly -- so for sure the tube is important. And as much as I hate all that it represents, its not THAT much of an inconveniences. It doesn't stop her from doing anything she wants. She's active, she swims, her friends aren't bothered by it. Its a life saver, really.

(((hugs)))good luck in making this decision, its never an easy choice.



PS. My husband and I made a decision to NEVER have to look back and wonder "what if we...", we never want to miss an opportunity to extend her life and health, so THAT was our final decision maker.
 
M

Mommafirst

Guest
I remember how hard it was to make this decision. My husband and I were not on the same page about it for a LONG time. He was insistent that "they" couldn't make us do this and he refused to participate. Just because you are a team in raising your child, doesn't mean you are always going to be at the same point in the process of acceptance right away. It took a long time for my husband to come to understand the needs of CF and to understand why the doctor thought the tube was important. He is now an active part of that process and is a big believer in the need for the tube. In fact, I'm the one that keeps pushing us to wean her while my husband insists that it does more good right now and we shouldn't get rid of it.

Alyssa was about Jordin's age when her weight became a problem, and the team first brought up the idea of the tube. We asked for more time. The team gave it to us and we tried everything to get weight on her. By the time she was 2.5, she weighed 22 pounds and was looking very gaunt. The doctors started pressing again, and we decided it was time.

She is now 4 and a half, its been almost 2 years since we got the tube. She weights 34 pounds and is doing much better. She cannot hold her weight, when we wean temporarily she loses rapidly -- so for sure the tube is important. And as much as I hate all that it represents, its not THAT much of an inconveniences. It doesn't stop her from doing anything she wants. She's active, she swims, her friends aren't bothered by it. Its a life saver, really.

(((hugs)))good luck in making this decision, its never an easy choice.



PS. My husband and I made a decision to NEVER have to look back and wonder "what if we...", we never want to miss an opportunity to extend her life and health, so THAT was our final decision maker.
 
M

Mommafirst

Guest
I remember how hard it was to make this decision. My husband and I were not on the same page about it for a LONG time. He was insistent that "they" couldn't make us do this and he refused to participate. Just because you are a team in raising your child, doesn't mean you are always going to be at the same point in the process of acceptance right away. It took a long time for my husband to come to understand the needs of CF and to understand why the doctor thought the tube was important. He is now an active part of that process and is a big believer in the need for the tube. In fact, I'm the one that keeps pushing us to wean her while my husband insists that it does more good right now and we shouldn't get rid of it.
<br />
<br />Alyssa was about Jordin's age when her weight became a problem, and the team first brought up the idea of the tube. We asked for more time. The team gave it to us and we tried everything to get weight on her. By the time she was 2.5, she weighed 22 pounds and was looking very gaunt. The doctors started pressing again, and we decided it was time.
<br />
<br />She is now 4 and a half, its been almost 2 years since we got the tube. She weights 34 pounds and is doing much better. She cannot hold her weight, when we wean temporarily she loses rapidly -- so for sure the tube is important. And as much as I hate all that it represents, its not THAT much of an inconveniences. It doesn't stop her from doing anything she wants. She's active, she swims, her friends aren't bothered by it. Its a life saver, really.
<br />
<br />(((hugs)))good luck in making this decision, its never an easy choice.
<br />
<br />
<br />
<br />PS. My husband and I made a decision to NEVER have to look back and wonder "what if we...", we never want to miss an opportunity to extend her life and health, so THAT was our final decision maker.
 
S

sdelorenzo

Guest
It is difficult to hear that your child needs a feeding tube, but afterwards you wonder what the big deal was. The first month is hard though with the long tube. But after that it is really easy. Much easier than breathing treatments. I usually only think about it for 2 minutes each night when I get my daughter's feeding ready. My daughter got her feeding tube at age 5 when she was at -5% bmi. She quickly gained 15 pounds in 4 months and has stayed at 60-80% bmi. It was so incredible to see the color in her skin and to see her have a healthy body. Her pft's also went from 65% to 115% and have also stayed at 115% the past three years. That was also a huge blessing. It is also just wonderful not to have the stress about getting her to gain weight.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 17 months no cf
 
S

sdelorenzo

Guest
It is difficult to hear that your child needs a feeding tube, but afterwards you wonder what the big deal was. The first month is hard though with the long tube. But after that it is really easy. Much easier than breathing treatments. I usually only think about it for 2 minutes each night when I get my daughter's feeding ready. My daughter got her feeding tube at age 5 when she was at -5% bmi. She quickly gained 15 pounds in 4 months and has stayed at 60-80% bmi. It was so incredible to see the color in her skin and to see her have a healthy body. Her pft's also went from 65% to 115% and have also stayed at 115% the past three years. That was also a huge blessing. It is also just wonderful not to have the stress about getting her to gain weight.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 17 months no cf
 
S

sdelorenzo

Guest
It is difficult to hear that your child needs a feeding tube, but afterwards you wonder what the big deal was. The first month is hard though with the long tube. But after that it is really easy. Much easier than breathing treatments. I usually only think about it for 2 minutes each night when I get my daughter's feeding ready. My daughter got her feeding tube at age 5 when she was at -5% bmi. She quickly gained 15 pounds in 4 months and has stayed at 60-80% bmi. It was so incredible to see the color in her skin and to see her have a healthy body. Her pft's also went from 65% to 115% and have also stayed at 115% the past three years. That was also a huge blessing. It is also just wonderful not to have the stress about getting her to gain weight.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 17 months no cf
<br />
 
J

jbrandonAW

New member
I have a g-tube. When my doctors mentioned it before I immediately rejected the idea. It seemed almost like a death sentence. Like getting the tube meant I was getting closer to the end or something. However since getting the tube (minus some minor UNCOMMON set backs) I feel better than ever AND my pfts and overall health is better.

I put on 20lbs in the first 2 months. I feel sooo much better now that I have it. The stress to eat is gone, and I hardly think about the fact that I have it.

It takes me about 5 minutes at night to flush it, put the formula into the bags, and prime it. Then I go to sleep. I hoenstly LOVE LOVE LOVE IT.

I think that gtubes should be standard in CF care. I wish I would have gotten one years ago.

One other thing is this - its removable. If you don't want it anymore, take it out and it closes up. So its not "permanent". Alot of people keep them and just use them when they are sick. Which is awesome. There are many times I am on IV's and don't feel like eating, but I can get my tubes feeds and because of it I heal faster.

One thing I can say is go with the AMT stuff. The connectors stay together MUCH better than the Mickey brand stuff. I found that the mickey stuff was always leaking and my button was popping. I love my AMT. They also just came out with a new button that I am interested in trying out.
 
J

jbrandonAW

New member
I have a g-tube. When my doctors mentioned it before I immediately rejected the idea. It seemed almost like a death sentence. Like getting the tube meant I was getting closer to the end or something. However since getting the tube (minus some minor UNCOMMON set backs) I feel better than ever AND my pfts and overall health is better.

I put on 20lbs in the first 2 months. I feel sooo much better now that I have it. The stress to eat is gone, and I hardly think about the fact that I have it.

It takes me about 5 minutes at night to flush it, put the formula into the bags, and prime it. Then I go to sleep. I hoenstly LOVE LOVE LOVE IT.

I think that gtubes should be standard in CF care. I wish I would have gotten one years ago.

One other thing is this - its removable. If you don't want it anymore, take it out and it closes up. So its not "permanent". Alot of people keep them and just use them when they are sick. Which is awesome. There are many times I am on IV's and don't feel like eating, but I can get my tubes feeds and because of it I heal faster.

One thing I can say is go with the AMT stuff. The connectors stay together MUCH better than the Mickey brand stuff. I found that the mickey stuff was always leaking and my button was popping. I love my AMT. They also just came out with a new button that I am interested in trying out.
 
J

jbrandonAW

New member
I have a g-tube. When my doctors mentioned it before I immediately rejected the idea. It seemed almost like a death sentence. Like getting the tube meant I was getting closer to the end or something. However since getting the tube (minus some minor UNCOMMON set backs) I feel better than ever AND my pfts and overall health is better.
<br />
<br />I put on 20lbs in the first 2 months. I feel sooo much better now that I have it. The stress to eat is gone, and I hardly think about the fact that I have it.
<br />
<br />It takes me about 5 minutes at night to flush it, put the formula into the bags, and prime it. Then I go to sleep. I hoenstly LOVE LOVE LOVE IT.
<br />
<br />I think that gtubes should be standard in CF care. I wish I would have gotten one years ago.
<br />
<br />One other thing is this - its removable. If you don't want it anymore, take it out and it closes up. So its not "permanent". Alot of people keep them and just use them when they are sick. Which is awesome. There are many times I am on IV's and don't feel like eating, but I can get my tubes feeds and because of it I heal faster.
<br />
<br />One thing I can say is go with the AMT stuff. The connectors stay together MUCH better than the Mickey brand stuff. I found that the mickey stuff was always leaking and my button was popping. I love my AMT. They also just came out with a new button that I am interested in trying out.
 
C

crickit715

New member
it was sooo hard to make the decision to get my daughter her tube...but i think it was absolutley one of the best decisions i made about her health!! before her tube she never was above the 5th percentile of nutrition. we were constantly in the hospital for failure to thrive and it was starting to affect her respiratory system. since the surgery (which by the way, even the night before she went in, i cried and wanted to stop it!) she steadily climbed to and has maintained over 85th percentile for the last 2 years! getting the tube has kept her out of the hospital when she caught a stomach bug last year and was becoming dehydrated...i was able to keep "pumping" pedialyte into her so she didnt need an IV. it makes it easier to give her liquid medications also. the first 6-8 weeks are the hardest, that is before the put the mickey button in. i am so thankful i made the decision to go ahead and have it done! i havent regretted in for one day!! good luck!
 
C

crickit715

New member
it was sooo hard to make the decision to get my daughter her tube...but i think it was absolutley one of the best decisions i made about her health!! before her tube she never was above the 5th percentile of nutrition. we were constantly in the hospital for failure to thrive and it was starting to affect her respiratory system. since the surgery (which by the way, even the night before she went in, i cried and wanted to stop it!) she steadily climbed to and has maintained over 85th percentile for the last 2 years! getting the tube has kept her out of the hospital when she caught a stomach bug last year and was becoming dehydrated...i was able to keep "pumping" pedialyte into her so she didnt need an IV. it makes it easier to give her liquid medications also. the first 6-8 weeks are the hardest, that is before the put the mickey button in. i am so thankful i made the decision to go ahead and have it done! i havent regretted in for one day!! good luck!
 
C

crickit715

New member
it was sooo hard to make the decision to get my daughter her tube...but i think it was absolutley one of the best decisions i made about her health!! before her tube she never was above the 5th percentile of nutrition. we were constantly in the hospital for failure to thrive and it was starting to affect her respiratory system. since the surgery (which by the way, even the night before she went in, i cried and wanted to stop it!) she steadily climbed to and has maintained over 85th percentile for the last 2 years! getting the tube has kept her out of the hospital when she caught a stomach bug last year and was becoming dehydrated...i was able to keep "pumping" pedialyte into her so she didnt need an IV. it makes it easier to give her liquid medications also. the first 6-8 weeks are the hardest, that is before the put the mickey button in. i am so thankful i made the decision to go ahead and have it done! i havent regretted in for one day!! good luck!
 
J

jbrandonAW

New member
I wanted to add 2 things -

1: The medication thing is the BEST. I take miralax (gag) BUT NOW I just push it through the tube. I have also had to do several xrays/scans that included dye and I didn't have to drink them either, just push it in. It really does make things easier -and Im a big girl lol.

2: I know alot of people get a "peg tube" first. I didn't go that route. Instead my doctor puts in a BARD button. Which is hard on the inside and very little on the outside. I actually liked it and have thought about going back too it. So talk to your doctor about that. You keep the BARD for atleast 6 weeks BUT my doc said he likes to to atleast 12.
 
J

jbrandonAW

New member
I wanted to add 2 things -

1: The medication thing is the BEST. I take miralax (gag) BUT NOW I just push it through the tube. I have also had to do several xrays/scans that included dye and I didn't have to drink them either, just push it in. It really does make things easier -and Im a big girl lol.

2: I know alot of people get a "peg tube" first. I didn't go that route. Instead my doctor puts in a BARD button. Which is hard on the inside and very little on the outside. I actually liked it and have thought about going back too it. So talk to your doctor about that. You keep the BARD for atleast 6 weeks BUT my doc said he likes to to atleast 12.
 
J

jbrandonAW

New member
I wanted to add 2 things -
<br />
<br />1: The medication thing is the BEST. I take miralax (gag) BUT NOW I just push it through the tube. I have also had to do several xrays/scans that included dye and I didn't have to drink them either, just push it in. It really does make things easier -and Im a big girl lol.
<br />
<br />2: I know alot of people get a "peg tube" first. I didn't go that route. Instead my doctor puts in a BARD button. Which is hard on the inside and very little on the outside. I actually liked it and have thought about going back too it. So talk to your doctor about that. You keep the BARD for atleast 6 weeks BUT my doc said he likes to to atleast 12.
 
A

ashmomo

New member
Thanks so much for all the advice/experiences <img src="i/expressions/face-icon-small-blush.gif" border="0">)

My daughter doesn't 'look' malnurished or anything. She has chubby cheeks and fat thighs. She is about 4th % for height for age, and not on the chart really, maybe about 0% for weight for age...but as far as I am concerned she looks great for 'her' height for weight. (I am not sure at the moment of her height for weight percentage, will be sure to get that tomorrow)

Did your kids/you all 'look/show' malnurishment before getting a tube? Just curious if 'looks' have anything to do with it. I am sure not, prob gotta go by the chart and by age?

I am sure I have more questions...but they're not coming to me at the moment...thanks for the help in deciding <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
Thanks so much for all the advice/experiences <img src="i/expressions/face-icon-small-blush.gif" border="0">)

My daughter doesn't 'look' malnurished or anything. She has chubby cheeks and fat thighs. She is about 4th % for height for age, and not on the chart really, maybe about 0% for weight for age...but as far as I am concerned she looks great for 'her' height for weight. (I am not sure at the moment of her height for weight percentage, will be sure to get that tomorrow)

Did your kids/you all 'look/show' malnurishment before getting a tube? Just curious if 'looks' have anything to do with it. I am sure not, prob gotta go by the chart and by age?

I am sure I have more questions...but they're not coming to me at the moment...thanks for the help in deciding <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
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