Feeding tube for my son- couple questions

TobysMom · Nov 23, 2009

Since my son was in my womb he's been measuring small, there was a point he had gotten to the 21st %ile while i was pregnant, but since then he's been 10th %ile or below. He was maintaining the curve until the last couple of months and his GI and myself finally agreed to just get him a feeding tube because that seems like the best route for him and his health.

He goes in on Monday (1 week from today) to get a PUG or PEG (whatever its called LOL) and then in 3-4 months he'll get a MIC-E button.

So, now my questions for parents that have children/toddlers with the feeding tube... how did they handle it? I am not sure how he'll handle being in the hospital for 5 days as he's quite the active lil bugger. And then I am worried he's going to try and pull it out. Speaking of which, what is the best route to go for what to put him in to sleep? Should he wear a 1 piece or 2 piece pajamas? I am thinking 2 pieces and then have to put one of those bandage/sleeves over it so he doesnt try to pull it out during his sleep. I know he'll eventually get used to it, and I really can't know until the time comes, but I am hoping to get a bit of feedback from other parents of young children/toddlers that may not understand they can't pull on it.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">

TobysMom · Nov 23, 2009

Since my son was in my womb he's been measuring small, there was a point he had gotten to the 21st %ile while i was pregnant, but since then he's been 10th %ile or below. He was maintaining the curve until the last couple of months and his GI and myself finally agreed to just get him a feeding tube because that seems like the best route for him and his health.

He goes in on Monday (1 week from today) to get a PUG or PEG (whatever its called LOL) and then in 3-4 months he'll get a MIC-E button.

So, now my questions for parents that have children/toddlers with the feeding tube... how did they handle it? I am not sure how he'll handle being in the hospital for 5 days as he's quite the active lil bugger. And then I am worried he's going to try and pull it out. Speaking of which, what is the best route to go for what to put him in to sleep? Should he wear a 1 piece or 2 piece pajamas? I am thinking 2 pieces and then have to put one of those bandage/sleeves over it so he doesnt try to pull it out during his sleep. I know he'll eventually get used to it, and I really can't know until the time comes, but I am hoping to get a bit of feedback from other parents of young children/toddlers that may not understand they can't pull on it.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">

TobysMom · Nov 23, 2009

Since my son was in my womb he's been measuring small, there was a point he had gotten to the 21st %ile while i was pregnant, but since then he's been 10th %ile or below. He was maintaining the curve until the last couple of months and his GI and myself finally agreed to just get him a feeding tube because that seems like the best route for him and his health.

He goes in on Monday (1 week from today) to get a PUG or PEG (whatever its called LOL) and then in 3-4 months he'll get a MIC-E button.

So, now my questions for parents that have children/toddlers with the feeding tube... how did they handle it? I am not sure how he'll handle being in the hospital for 5 days as he's quite the active lil bugger. And then I am worried he's going to try and pull it out. Speaking of which, what is the best route to go for what to put him in to sleep? Should he wear a 1 piece or 2 piece pajamas? I am thinking 2 pieces and then have to put one of those bandage/sleeves over it so he doesnt try to pull it out during his sleep. I know he'll eventually get used to it, and I really can't know until the time comes, but I am hoping to get a bit of feedback from other parents of young children/toddlers that may not understand they can't pull on it.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">

TobysMom · Nov 23, 2009

Since my son was in my womb he's been measuring small, there was a point he had gotten to the 21st %ile while i was pregnant, but since then he's been 10th %ile or below. He was maintaining the curve until the last couple of months and his GI and myself finally agreed to just get him a feeding tube because that seems like the best route for him and his health.

He goes in on Monday (1 week from today) to get a PUG or PEG (whatever its called LOL) and then in 3-4 months he'll get a MIC-E button.

So, now my questions for parents that have children/toddlers with the feeding tube... how did they handle it? I am not sure how he'll handle being in the hospital for 5 days as he's quite the active lil bugger. And then I am worried he's going to try and pull it out. Speaking of which, what is the best route to go for what to put him in to sleep? Should he wear a 1 piece or 2 piece pajamas? I am thinking 2 pieces and then have to put one of those bandage/sleeves over it so he doesnt try to pull it out during his sleep. I know he'll eventually get used to it, and I really can't know until the time comes, but I am hoping to get a bit of feedback from other parents of young children/toddlers that may not understand they can't pull on it.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">

TobysMom · Nov 23, 2009

Since my son was in my womb he's been measuring small, there was a point he had gotten to the 21st %ile while i was pregnant, but since then he's been 10th %ile or below. He was maintaining the curve until the last couple of months and his GI and myself finally agreed to just get him a feeding tube because that seems like the best route for him and his health.
 
 He goes in on Monday (1 week from today) to get a PUG or PEG (whatever its called LOL) and then in 3-4 months he'll get a MIC-E button.
 
 So, now my questions for parents that have children/toddlers with the feeding tube... how did they handle it? I am not sure how he'll handle being in the hospital for 5 days as he's quite the active lil bugger. And then I am worried he's going to try and pull it out. Speaking of which, what is the best route to go for what to put him in to sleep? Should he wear a 1 piece or 2 piece pajamas? I am thinking 2 pieces and then have to put one of those bandage/sleeves over it so he doesnt try to pull it out during his sleep. I know he'll eventually get used to it, and I really can't know until the time comes, but I am hoping to get a bit of feedback from other parents of young children/toddlers that may not understand they can't pull on it.
 
 thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">

mariahsmommy · Nov 23, 2009

I absolutely love my daughter's mickey button. She is twelve months and it has to date never leaked from the opening of the tube, it may only leak on her skin around the tube and make it red when it is getting loose and I need to change it.
She hasn't really tried to pull it out, she like to play with it a little but I tell her no and like most things if they do it once they probably won't do it again because it hurt so bad. You just really have to watch them while you are feeding them because they can grab the cord and yank on it.
You may have to cover it up for awhile since he is older but he will eventually get used to it and you won't be stressing about his weight anymore. Mariah is in the 75th percentile on her W/L. Again I absolutely love the button.
One thing that I always get when people see it is, "Oh, how long will she have that?" It used to bother me but not anymore because I know because of it she is healthy and I honestly don't care if she has it forever as long as she maintains a healthy weight.
Life with CF is tough as you know but we have to take what people say with the grain of salt and be thankful our babies are here and playing today. Nothing in life is perfect and I don't know about you but I am so excited about the Pipeline.
Have you watched the videoes from the conference? If not, they are so awesome and have given me so much hope. Go to CFF.org and look for the webcast and the three plenary sessions from the conference. They are about 1 hour long a piece, but gives you something to do during treatments.
Best of luck to you and I will say a prayer for his surgery.
felicia

mariahsmommy · Nov 23, 2009

I absolutely love my daughter's mickey button. She is twelve months and it has to date never leaked from the opening of the tube, it may only leak on her skin around the tube and make it red when it is getting loose and I need to change it.
She hasn't really tried to pull it out, she like to play with it a little but I tell her no and like most things if they do it once they probably won't do it again because it hurt so bad. You just really have to watch them while you are feeding them because they can grab the cord and yank on it.
You may have to cover it up for awhile since he is older but he will eventually get used to it and you won't be stressing about his weight anymore. Mariah is in the 75th percentile on her W/L. Again I absolutely love the button.
One thing that I always get when people see it is, "Oh, how long will she have that?" It used to bother me but not anymore because I know because of it she is healthy and I honestly don't care if she has it forever as long as she maintains a healthy weight.
Life with CF is tough as you know but we have to take what people say with the grain of salt and be thankful our babies are here and playing today. Nothing in life is perfect and I don't know about you but I am so excited about the Pipeline.
Have you watched the videoes from the conference? If not, they are so awesome and have given me so much hope. Go to CFF.org and look for the webcast and the three plenary sessions from the conference. They are about 1 hour long a piece, but gives you something to do during treatments.
Best of luck to you and I will say a prayer for his surgery.
felicia

mariahsmommy · Nov 23, 2009

I absolutely love my daughter's mickey button. She is twelve months and it has to date never leaked from the opening of the tube, it may only leak on her skin around the tube and make it red when it is getting loose and I need to change it.
She hasn't really tried to pull it out, she like to play with it a little but I tell her no and like most things if they do it once they probably won't do it again because it hurt so bad. You just really have to watch them while you are feeding them because they can grab the cord and yank on it.
You may have to cover it up for awhile since he is older but he will eventually get used to it and you won't be stressing about his weight anymore. Mariah is in the 75th percentile on her W/L. Again I absolutely love the button.
One thing that I always get when people see it is, "Oh, how long will she have that?" It used to bother me but not anymore because I know because of it she is healthy and I honestly don't care if she has it forever as long as she maintains a healthy weight.
Life with CF is tough as you know but we have to take what people say with the grain of salt and be thankful our babies are here and playing today. Nothing in life is perfect and I don't know about you but I am so excited about the Pipeline.
Have you watched the videoes from the conference? If not, they are so awesome and have given me so much hope. Go to CFF.org and look for the webcast and the three plenary sessions from the conference. They are about 1 hour long a piece, but gives you something to do during treatments.
Best of luck to you and I will say a prayer for his surgery.
felicia

mariahsmommy · Nov 23, 2009

I absolutely love my daughter's mickey button. She is twelve months and it has to date never leaked from the opening of the tube, it may only leak on her skin around the tube and make it red when it is getting loose and I need to change it.
She hasn't really tried to pull it out, she like to play with it a little but I tell her no and like most things if they do it once they probably won't do it again because it hurt so bad. You just really have to watch them while you are feeding them because they can grab the cord and yank on it.
You may have to cover it up for awhile since he is older but he will eventually get used to it and you won't be stressing about his weight anymore. Mariah is in the 75th percentile on her W/L. Again I absolutely love the button.
One thing that I always get when people see it is, "Oh, how long will she have that?" It used to bother me but not anymore because I know because of it she is healthy and I honestly don't care if she has it forever as long as she maintains a healthy weight.
Life with CF is tough as you know but we have to take what people say with the grain of salt and be thankful our babies are here and playing today. Nothing in life is perfect and I don't know about you but I am so excited about the Pipeline.
Have you watched the videoes from the conference? If not, they are so awesome and have given me so much hope. Go to CFF.org and look for the webcast and the three plenary sessions from the conference. They are about 1 hour long a piece, but gives you something to do during treatments.
Best of luck to you and I will say a prayer for his surgery.
felicia

mariahsmommy · Nov 23, 2009

I absolutely love my daughter's mickey button. She is twelve months and it has to date never leaked from the opening of the tube, it may only leak on her skin around the tube and make it red when it is getting loose and I need to change it.
 She hasn't really tried to pull it out, she like to play with it a little but I tell her no and like most things if they do it once they probably won't do it again because it hurt so bad. You just really have to watch them while you are feeding them because they can grab the cord and yank on it.
 You may have to cover it up for awhile since he is older but he will eventually get used to it and you won't be stressing about his weight anymore. Mariah is in the 75th percentile on her W/L. Again I absolutely love the button.
 One thing that I always get when people see it is, "Oh, how long will she have that?" It used to bother me but not anymore because I know because of it she is healthy and I honestly don't care if she has it forever as long as she maintains a healthy weight.
 Life with CF is tough as you know but we have to take what people say with the grain of salt and be thankful our babies are here and playing today. Nothing in life is perfect and I don't know about you but I am so excited about the Pipeline.
 Have you watched the videoes from the conference? If not, they are so awesome and have given me so much hope. Go to CFF.org and look for the webcast and the three plenary sessions from the conference. They are about 1 hour long a piece, but gives you something to do during treatments.
 Best of luck to you and I will say a prayer for his surgery.
 felicia

nanster · Jan 12, 2010

I am new (tonight I signed up) and was thrilled to read your message. My granddaughter is scheduled for her "button" surgery next week. She is 14 mts old and really tosses in her sleep. I am afraid of the tube wrapping around her neck while she tosses!! You know grandmas, they worry about everything.
Our surgeon says the tube feeding will greatly help her weight issues and decrease our stress when she doesn't eat.

One suggestion about "access" to button. Might I suggest a button hole be sewn into pj's and any underwear near button so overnight feeding access is easy.

Thank you for allowing me to share your feeding tube issues. This is a big jump for us in our family and we need all the assistance of parents out there, not just info doctors give us.

nanster · Jan 12, 2010

I am new (tonight I signed up) and was thrilled to read your message. My granddaughter is scheduled for her "button" surgery next week. She is 14 mts old and really tosses in her sleep. I am afraid of the tube wrapping around her neck while she tosses!! You know grandmas, they worry about everything.
Our surgeon says the tube feeding will greatly help her weight issues and decrease our stress when she doesn't eat.

One suggestion about "access" to button. Might I suggest a button hole be sewn into pj's and any underwear near button so overnight feeding access is easy.

Thank you for allowing me to share your feeding tube issues. This is a big jump for us in our family and we need all the assistance of parents out there, not just info doctors give us.

nanster · Jan 12, 2010

I am new (tonight I signed up) and was thrilled to read your message. My granddaughter is scheduled for her "button" surgery next week. She is 14 mts old and really tosses in her sleep. I am afraid of the tube wrapping around her neck while she tosses!! You know grandmas, they worry about everything.
Our surgeon says the tube feeding will greatly help her weight issues and decrease our stress when she doesn't eat.

One suggestion about "access" to button. Might I suggest a button hole be sewn into pj's and any underwear near button so overnight feeding access is easy.

Thank you for allowing me to share your feeding tube issues. This is a big jump for us in our family and we need all the assistance of parents out there, not just info doctors give us.

nanster · Jan 12, 2010

I am new (tonight I signed up) and was thrilled to read your message. My granddaughter is scheduled for her "button" surgery next week. She is 14 mts old and really tosses in her sleep. I am afraid of the tube wrapping around her neck while she tosses!! You know grandmas, they worry about everything.
Our surgeon says the tube feeding will greatly help her weight issues and decrease our stress when she doesn't eat.

One suggestion about "access" to button. Might I suggest a button hole be sewn into pj's and any underwear near button so overnight feeding access is easy.

Thank you for allowing me to share your feeding tube issues. This is a big jump for us in our family and we need all the assistance of parents out there, not just info doctors give us.

nanster · Jan 12, 2010

I am new (tonight I signed up) and was thrilled to read your message. My granddaughter is scheduled for her "button" surgery next week. She is 14 mts old and really tosses in her sleep. I am afraid of the tube wrapping around her neck while she tosses!! You know grandmas, they worry about everything.
 Our surgeon says the tube feeding will greatly help her weight issues and decrease our stress when she doesn't eat.
 
 One suggestion about "access" to button. Might I suggest a button hole be sewn into pj's and any underwear near button so overnight feeding access is easy.
 
 Thank you for allowing me to share your feeding tube issues. This is a big jump for us in our family and we need all the assistance of parents out there, not just info doctors give us.

Feeding tube for my son- couple questions

TobysMom

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