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feeding tube confusion

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Hi everyone,

It has been a while since I posted last. But when I did we were just

making the decision whether to get a feeding tube or not. Well we

did and it has been two months. When we talked about getting the

tube with our GI doctor we asked about the button. We were told

that we would after a couple months. Well when I called the nurse to

ask when we would get it she said that not unless what we have is a

problem, that they have never done that for their patients. We were

very upset because we were under the impression that what we have is

part of the process and you change to the button in a couple

months. Well from that the nurse said we could talk to him today.

In talking with him we come away with this, more maintenance, a

different type of plastic which may cause granulation tissue or

irritation, and the balloons bust and have to be changed out. Now I

guess it is up to us. Today he shortened the line today that we tape

to her. So we need some input on the buttons or if anyone has just

kept tube with the line and adaptor on the end (I don't know what it

is called). Any help or advice would be great. We don't know what to

do now. We were very angry because we thought what we have now was

one step to the button but now the button sounds kind of scary.

Tolbert

Maddison RSS, 1 month away from being 5 yrs, 26 lbs,

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