For the last several months Grayson hasnt used her tube for any feeding. I docs think we may beable to take it out as long as she is still gain and healthy. Everyone is on board. Im scared to get rid of it cuz i use it as a crutch. We havnt used it for a few months now. Just giving meds through it. So next thing is to get her to take her meds orally. Im so torn. I like it for convenience. But hate the extra work to clean it and making sure she isn't playing with it. Has anyone have the same situation?
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Thinking about taking mic-key button out
- Thread starter Tcole
- Start date
For the last several months Grayson hasnt used her tube for any feeding. I docs think we may beable to take it out as long as she is still gain and healthy. Everyone is on board. Im scared to get rid of it cuz i use it as a crutch. We havnt used it for a few months now. Just giving meds through it. So next thing is to get her to take her meds orally. Im so torn. I like it for convenience. But hate the extra work to clean it and making sure she isn't playing with it. Has anyone have the same situation?
For the last several months Grayson hasnt used her tube for any feeding. I docs think we may beable to take it out as long as she is still gain and healthy. Everyone is on board. Im scared to get rid of it cuz i use it as a crutch. We havnt used it for a few months now. Just giving meds through it. So next thing is to get her to take her meds orally. Im so torn. I like it for convenience. But hate the extra work to clean it and making sure she isn't playing with it. Has anyone have the same situation?
For the last several months Grayson hasnt used her tube for any feeding. I docs think we may beable to take it out as long as she is still gain and healthy. Everyone is on board. Im scared to get rid of it cuz i use it as a crutch. We havnt used it for a few months now. Just giving meds through it. So next thing is to get her to take her meds orally. Im so torn. I like it for convenience. But hate the extra work to clean it and making sure she isn't playing with it. Has anyone have the same situation?
For the last several months Grayson hasnt used her tube for any feeding. I docs think we may beable to take it out as long as she is still gain and healthy. Everyone is on board. Im scared to get rid of it cuz i use it as a crutch. We havnt used it for a few months now. Just giving meds through it. So next thing is to get her to take her meds orally. Im so torn. I like it for convenience. But hate the extra work to clean it and making sure she isn't playing with it. Has anyone have the same situation?
Honestly, if it is not causing issues (leaking, pain, granulation, etc) I would leave it in for a while longer.
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Honestly, if it is not causing issues (leaking, pain, granulation, etc) I would leave it in for a while longer.
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Honestly, if it is not causing issues (leaking, pain, granulation, etc) I would leave it in for a while longer.
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Honestly, if it is not causing issues (leaking, pain, granulation, etc) I would leave it in for a while longer.
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
just my .02 worth
Honestly, if it is not causing issues (leaking, pain, granulation, etc) I would leave it in for a while longer.
<br />
<br />Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
<br />
<br />As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
<br />
<br />While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
<br />
<br />just my .02 worth
<br />
<br />Our son is 7 and rarely uses his; however, we have left it in. We discussed removing and his CF & Liver Drs wanted it left in 'just in case'. We balked at first, but figured we'd give it time and try again.
<br />
<br />As it turns out, we don't use often, however, when he is sick or having issues with weight it is great to have. The other option would be to end up in the hospital when he started losing weight.
<br />
<br />While I can agree with the idea of wanting it gone, I see some strong reasons to leave it in, for now. Especially since while things are more stable now, Grayson is still pretty young and you would hate to have to put another one back in if she got into trouble (praying that doesn't happen).
<br />
<br />just my .02 worth
M
Mommafirst
Guest
That is FANTASTIC that Grayson hasn't needed the button or feeds in awhile. I definitely think that making sure all are on board is important. My daughter only got hers this past November, when she was just shy of turning three. I hope that we can remove it before she starts kindergarten. But the thing is that she grew so poorly before it and is growing so well right now. I think I'd want to have it completely inactive (no use at all -- meds or anything) for a full year. If Grayson is gaining on her own and you don't need the button for fluids or food through a whole winter (winter seems to be the hardest times for our CF kiddos) than I'd be doing the hallelujah dance and removing it!!!
M
Mommafirst
Guest
That is FANTASTIC that Grayson hasn't needed the button or feeds in awhile. I definitely think that making sure all are on board is important. My daughter only got hers this past November, when she was just shy of turning three. I hope that we can remove it before she starts kindergarten. But the thing is that she grew so poorly before it and is growing so well right now. I think I'd want to have it completely inactive (no use at all -- meds or anything) for a full year. If Grayson is gaining on her own and you don't need the button for fluids or food through a whole winter (winter seems to be the hardest times for our CF kiddos) than I'd be doing the hallelujah dance and removing it!!!
M
Mommafirst
Guest
That is FANTASTIC that Grayson hasn't needed the button or feeds in awhile. I definitely think that making sure all are on board is important. My daughter only got hers this past November, when she was just shy of turning three. I hope that we can remove it before she starts kindergarten. But the thing is that she grew so poorly before it and is growing so well right now. I think I'd want to have it completely inactive (no use at all -- meds or anything) for a full year. If Grayson is gaining on her own and you don't need the button for fluids or food through a whole winter (winter seems to be the hardest times for our CF kiddos) than I'd be doing the hallelujah dance and removing it!!!
M
Mommafirst
Guest
That is FANTASTIC that Grayson hasn't needed the button or feeds in awhile. I definitely think that making sure all are on board is important. My daughter only got hers this past November, when she was just shy of turning three. I hope that we can remove it before she starts kindergarten. But the thing is that she grew so poorly before it and is growing so well right now. I think I'd want to have it completely inactive (no use at all -- meds or anything) for a full year. If Grayson is gaining on her own and you don't need the button for fluids or food through a whole winter (winter seems to be the hardest times for our CF kiddos) than I'd be doing the hallelujah dance and removing it!!!
M
Mommafirst
Guest
That is FANTASTIC that Grayson hasn't needed the button or feeds in awhile. I definitely think that making sure all are on board is important. My daughter only got hers this past November, when she was just shy of turning three. I hope that we can remove it before she starts kindergarten. But the thing is that she grew so poorly before it and is growing so well right now. I think I'd want to have it completely inactive (no use at all -- meds or anything) for a full year. If Grayson is gaining on her own and you don't need the button for fluids or food through a whole winter (winter seems to be the hardest times for our CF kiddos) than I'd be doing the hallelujah dance and removing it!!!
C
Cherylwithone
Guest
The problem if you remove what happens late on down the road when she is fighting an infection and can't gain the weight on her owen. Do you use a NG tube or have another one replaced. My daughter is 16 does'nt use hers unless her weight drops which it does with each infectio. It also comes in handy if your backed up and need to clean out the GI track. I think it is great that she does'nt need it but think of the what if's and weigh all the options before removing it. JUst my two cents.
C
Cherylwithone
Guest
The problem if you remove what happens late on down the road when she is fighting an infection and can't gain the weight on her owen. Do you use a NG tube or have another one replaced. My daughter is 16 does'nt use hers unless her weight drops which it does with each infectio. It also comes in handy if your backed up and need to clean out the GI track. I think it is great that she does'nt need it but think of the what if's and weigh all the options before removing it. JUst my two cents.
C
Cherylwithone
Guest
The problem if you remove what happens late on down the road when she is fighting an infection and can't gain the weight on her owen. Do you use a NG tube or have another one replaced. My daughter is 16 does'nt use hers unless her weight drops which it does with each infectio. It also comes in handy if your backed up and need to clean out the GI track. I think it is great that she does'nt need it but think of the what if's and weigh all the options before removing it. JUst my two cents.
C
Cherylwithone
Guest
The problem if you remove what happens late on down the road when she is fighting an infection and can't gain the weight on her owen. Do you use a NG tube or have another one replaced. My daughter is 16 does'nt use hers unless her weight drops which it does with each infectio. It also comes in handy if your backed up and need to clean out the GI track. I think it is great that she does'nt need it but think of the what if's and weigh all the options before removing it. JUst my two cents.
C
Cherylwithone
Guest
The problem if you remove what happens late on down the road when she is fighting an infection and can't gain the weight on her owen. Do you use a NG tube or have another one replaced. My daughter is 16 does'nt use hers unless her weight drops which it does with each infectio. It also comes in handy if your backed up and need to clean out the GI track. I think it is great that she does'nt need it but think of the what if's and weigh all the options before removing it. JUst my two cents.