Mickey button popped out!

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taylorsmommy

New member
<br>My child's mickey button popped out during the night. It has since healed enough I can not stick the button back in (it has been 6+hours).  I immediately called our doctor and the childrens hospital and am awaiting a return call. My child only receives enteral feeds through her button. I have placed gauze over the site and taped it, and my daughter can't hide her happiness of having "normal" tummy. She is a preteen and states that she does not want the button replaced-she is willing to drink the 3-4 cans of enteral formula during the day in order to keep from having the button put back in. She I trust this-what are your thoughts on this? By the way, she has a great appetite when she misses a night feed, rarely misses enzymes. Any one elses kids had their buttons removed? If so, how old were they?
 
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taylorsmommy

New member
<br>My child's mickey button popped out during the night. It has since healed enough I can not stickthe buttonback in (it has been 6+hours). I immediately called our doctor and the childrens hospital and am awaiting a return call. My child only receives enteral feeds through her button. I have placed gauze over the site and taped it, and my daughter can't hide her happiness of having "normal" tummy. She is a preteen and states that she does not want the button replaced-she is willing to drink the 3-4 cans of enteral formula during the day in order to keep from having the button put back in. She I trust this-what are your thoughts on this? By the way, she has a great appetite when she misses a night feed, rarely misses enzymes. Any one elses kids had their buttons removed? If so, how old were they?
 
T

taylorsmommy

New member
<br>My child's mickey button popped out during the night. It has since healed enough I can not stickthe buttonback in (it has been 6+hours). I immediately called our doctor and the childrens hospital and am awaiting a return call. My child only receives enteral feeds through her button. I have placed gauze over the site and taped it, and my daughter can't hide her happiness of having "normal" tummy. She is a preteen and states that she does not want the button replaced-she is willing to drink the 3-4 cans of enteral formula during the day in order to keep from having the button put back in. She I trust this-what are your thoughts on this? By the way, she has a great appetite when she misses a night feed, rarely misses enzymes. Any one elses kids had their buttons removed? If so, how old were they?
 
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Mommafirst

Guest
Ugh, sorry the button popped out, I've been there. What a pain. My daughter is younger than yours, so I'm not really sure what advice to give about letter her avoid getting the button back in. I think a lot would depend on how well she can gain and grow without the night feeds. We have tried a wean more times than I can count from the night feeds, but every time, my daughter really struggles to gain and grow. I'd think your daughter is on the cusp of puberty and a lot of gaining and growing that needs to be done, failure to thrive could make her hit puberty later and be smaller than all her peers. And, of course, being smaller can have a profound impact on her lung health. All that being said (and I'm sure you know all this), its your joint decision to make -- with your daughter since ultimately its her body and her life, but you are still the parent who understands the implications of not replacing the button.

Good luck. This is very difficult for sure.

Heather
 
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Mommafirst

Guest
Ugh, sorry the button popped out, I've been there. What a pain. My daughter is younger than yours, so I'm not really sure what advice to give about letter her avoid getting the button back in. I think a lot would depend on how well she can gain and grow without the night feeds. We have tried a wean more times than I can count from the night feeds, but every time, my daughter really struggles to gain and grow. I'd think your daughter is on the cusp of puberty and a lot of gaining and growing that needs to be done, failure to thrive could make her hit puberty later and be smaller than all her peers. And, of course, being smaller can have a profound impact on her lung health. All that being said (and I'm sure you know all this), its your joint decision to make -- with your daughter since ultimately its her body and her life, but you are still the parent who understands the implications of not replacing the button.

Good luck. This is very difficult for sure.

Heather
 
M

Mommafirst

Guest
Ugh, sorry the button popped out, I've been there. What a pain. My daughter is younger than yours, so I'm not really sure what advice to give about letter her avoid getting the button back in. I think a lot would depend on how well she can gain and grow without the night feeds. We have tried a wean more times than I can count from the night feeds, but every time, my daughter really struggles to gain and grow. I'd think your daughter is on the cusp of puberty and a lot of gaining and growing that needs to be done, failure to thrive could make her hit puberty later and be smaller than all her peers. And, of course, being smaller can have a profound impact on her lung health. All that being said (and I'm sure you know all this), its your joint decision to make -- with your daughter since ultimately its her body and her life, but you are still the parent who understands the implications of not replacing the button.
<br />
<br />Good luck. This is very difficult for sure.
<br />
<br />Heather
 
I

Incomudrox

New member
My advise would be to get it put back in. If she goes down hill from not using it they will just have to make another entry point somewhere else. Leaving the old site as a scar. If it's not completely healed over they can probably put it back in the same spot after a couple days the scar tissue maybe to great and they will have to make a new hole. Put it back in see if she can maintain for a few YEARS. If she can let her decide for her self when she is old enough. I don't use my button anymore, but I know that I may need it so I don't get rid of it. I can maintain without it but you have no idea what the future holds. I think it would be very foolish to let it stay out. It's also a lot harder than she may think to drink that much formula during the day and eat the SAME intake of food as she was when she got over-night feeds. The trick to the button is you are taking advantage of time you would not normally be able to eat and eating normally during the day. But fitting 4 cans plus normal 2000+ calorie diet during the day is very hard. Also consider what insurance company will say when it comes time to pay for a whole other placement. It's one thing if it popped out, its another if you let it stay out and have to get the whole thing done over.
 
I

Incomudrox

New member
My advise would be to get it put back in. If she goes down hill from not using it they will just have to make another entry point somewhere else. Leaving the old site as a scar. If it's not completely healed over they can probably put it back in the same spot after a couple days the scar tissue maybe to great and they will have to make a new hole. Put it back in see if she can maintain for a few YEARS. If she can let her decide for her self when she is old enough. I don't use my button anymore, but I know that I may need it so I don't get rid of it. I can maintain without it but you have no idea what the future holds. I think it would be very foolish to let it stay out. It's also a lot harder than she may think to drink that much formula during the day and eat the SAME intake of food as she was when she got over-night feeds. The trick to the button is you are taking advantage of time you would not normally be able to eat and eating normally during the day. But fitting 4 cans plus normal 2000+ calorie diet during the day is very hard. Also consider what insurance company will say when it comes time to pay for a whole other placement. It's one thing if it popped out, its another if you let it stay out and have to get the whole thing done over.
 
I

Incomudrox

New member
My advise would be to get it put back in. If she goes down hill from not using it they will just have to make another entry point somewhere else. Leaving the old site as a scar. If it's not completely healed over they can probably put it back in the same spot after a couple days the scar tissue maybe to great and they will have to make a new hole. Put it back in see if she can maintain for a few YEARS. If she can let her decide for her self when she is old enough. I don't use my button anymore, but I know that I may need it so I don't get rid of it. I can maintain without it but you have no idea what the future holds. I think it would be very foolish to let it stay out. It's also a lot harder than she may think to drink that much formula during the day and eat the SAME intake of food as she was when she got over-night feeds. The trick to the button is you are taking advantage of time you would not normally be able to eat and eating normally during the day. But fitting 4 cans plus normal 2000+ calorie diet during the day is very hard. Also consider what insurance company will say when it comes time to pay for a whole other placement. It's one thing if it popped out, its another if you let it stay out and have to get the whole thing done over.
 
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Tracy390

Guest
<br>Sorry to hear about that.  My daughter has had her button for many years now.  She is 20 now & still does her own feeds through the night.  She said the formula tastes bad & could not drink it.  Especially that much volume.  It's a very nice option to have especially if they have a bad day & don't have an appetite to eat.  I would have it put back in if I were you.  It's really not noticeable & i know my daughter is getting the nutrition she needs to fight any infections that may come up.  I would talk with her CF doctor & dietician to see what their views are but I'm guessing they will want it put back in.  It depends on where your child is on the growth chart.  I think nutrition is a very important part of CF when it comes to your childs care.  Good luck in your decision.
 
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Tracy390

Guest
<br>Sorry to hear about that. My daughter has had her button for many years now. She is 20 now & still does her own feeds through the night. She said the formula tastes bad & could not drink it. Especially that much volume. It's avery nice option to have especially if they have a bad day & don't have an appetite to eat. I would have it put back in if I were you. It's really not noticeable & i know my daughter is getting the nutrition she needs to fight any infections that may come up. I would talk with her CF doctor & dietician to see what their views are but I'm guessing they will want it put back in. It depends on where your child is on the growth chart. I think nutrition is a very important part of CF when it comes to your childs care. Good luck in your decision.
 
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Tracy390

Guest
<br>Sorry to hear about that. My daughter has had her button for many years now. She is 20 now & still does her own feeds through the night. She said the formula tastes bad & could not drink it. Especially that much volume. It's avery nice option to have especially if they have a bad day & don't have an appetite to eat. I would have it put back in if I were you. It's really not noticeable & i know my daughter is getting the nutrition she needs to fight any infections that may come up. I would talk with her CF doctor & dietician to see what their views are but I'm guessing they will want it put back in. It depends on where your child is on the growth chart. I think nutrition is a very important part of CF when it comes to your childs care. Good luck in your decision.
 
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JennyCoulon

New member
Our oldest who is 12 has the Mini button and he has had it for about 6 years. He gets his feedings at night about 6 nights a week which gives him the majority of his calories. HE has had great weight gain and keeps on track on the weight and BMI charts. He goes thru spurts where he asks about the button being taken out and what I tell him is if he wants to do a trial to see if he can keep up with the calories that are needed and keep up the path on the charts we can always talk to the docs. I tell him that even if they were to do this they would leave the button in so another surgery wouldn't be needed. He hasn't yet decided to do that b/c even though he doesn't like it and he is dealing with the whole Middle School fitting in thing and trying to hide it, etc he knows that the button is what is saving his life. I would really think about it and my personal choice would be that the button needs to go back in but you will have to make their decision for your own child. Good luck as I know it is a tough decision but just think about the past as to what caused the button to be placed and the present as to if you think the weight could be gained without it. Good luck
 
J

JennyCoulon

New member
Our oldest who is 12has the Mini button and he has had it for about 6 years. He gets his feedings at night about 6 nights a week which gives him the majority of his calories. HE has had great weight gain and keeps on track on the weight and BMI charts. He goes thru spurts where he asks about the button being taken out and what I tell him is if he wants to do a trial to see if he can keep up with the calories that are needed and keep up the path on the charts we can always talk to the docs. I tell him that even if they were to do this they would leave the button in so another surgery wouldn't be needed. He hasn't yet decided to do that b/c even though he doesn't like it and he is dealing with the whole Middle School fitting in thing and trying to hide it, etc he knows that the button is what is saving his life. I would really think about it and my personal choice would be that the button needs to go back in but you will have to make their decision for your own child. Good luck as I know it is a tough decision but just think about the past as to what caused the button to be placed and the present as to if you think the weight could be gained without it. Good luck
 
J

JennyCoulon

New member
Our oldest who is 12has the Mini button and he has had it for about 6 years. He gets his feedings at night about 6 nights a week which gives him the majority of his calories. HE has had great weight gain and keeps on track on the weight and BMI charts. He goes thru spurts where he asks about the button being taken out and what I tell him is if he wants to do a trial to see if he can keep up with the calories that are needed and keep up the path on the charts we can always talk to the docs. I tell him that even if they were to do this they would leave the button in so another surgery wouldn't be needed. He hasn't yet decided to do that b/c even though he doesn't like it and he is dealing with the whole Middle School fitting in thing and trying to hide it, etc he knows that the button is what is saving his life. I would really think about it and my personal choice would be that the button needs to go back in but you will have to make their decision for your own child. Good luck as I know it is a tough decision but just think about the past as to what caused the button to be placed and the present as to if you think the weight could be gained without it. Good luck<BR>
 
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Tisha

New member
I've never had a button, so I'm speaking from my own thoughts... Why don't you give it a try without that button? If it's out already and it requires surgery to get in again, you might as well wait a few weeks/months and see if she can do without it? You can always put it back in... That's just my personal opinion. I've always been against artificial stuff (and feeding) as much as I could avoid it!
 
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Tisha

New member
I've never had a button, so I'm speaking from my own thoughts... Why don't you give it a try without that button? If it's out already and it requires surgery to get in again, you might as well wait a few weeks/months and see if she can do without it? You can always put it back in... That's just my personal opinion. I've always been against artificial stuff (and feeding) as much as I could avoid it!
 
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