Need help with valve on tube

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TGB1

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Hi all,
My mom has had her peg since Jan 2012, absolutely no problems from the beginning. I don't know how to describe the opening (where syringe goes) except to say there is one main opening, and then one tiny opening off to the side that we don't use. The only time I even open the small offshoot is to clean out any excess formula that has landed there. Anyway, the top of the small opening has ripped off, which isn't a huge big deal cause I still have it in there to close the opening, just isn't attached. Now my question, cant this entire top valve just be detached from the tube and replaced? I have been going back and forth with the gastroenterologist's office for 2 weeks about this. They are saying that the entire tube needs to be replaced and she has to schedule endoscopy. Are they nuts? I'm thinking this is a fairly common occurrence for this plastic stuff that is manipulated every day to break apart. There is absolutely nothing wrong with her tube. I appreciate any input on this. There is no way I am scheduling an endoscopy for an 86 year old. Thanks for listening, Trina
 

kiwisally

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I had the exact same experience. Apparently they all have idiots working for them world wide. Tell the office staff to have the gasto ring you to discuss it or better yet email you and explain why they are telling you to scheduled a procedure that would cost thousands (not to mention the physical toll on your mom) so you can get a .25 replacement part. Make sure you get the names of those that won't sort this out for you so you can complain because ultimately it is the gastro's responsibility to educate his staff.
 

momals2008

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Hello ive had this happen to my mom whe 78 I usually take her to the emergency room and they changed the tube then take an xray at bedside ti make sure it is in properly. Sometimes when the tip break off I can still closs it with the piece that was there. I spoke to a hopice nurse who told me they can change the feeding tube at home
 

BrianD

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A picture is worth a thousand words.

Do you know if the tube is held in with an inflated balloon, or an attached stopper/bumper thing?
 

KrisS

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The description you gave of your tip fits exactly what my pals is like. I have had to replace the one on my husbands PEG twice now. It has not been difficult at all. You remove the tip by just pulling it out and attach the new one by slipping it into place. The first one we got from the Dr. that placed the PEG and the most recent one was ordered by hospice from the company supplying everything associated with his nutrition. I hope you get one and it is as easy as my pals was. Good luck, Kris
 

TGB1

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Thanks everyone for responding. I am going to ask the company who supplies her nutrition cans about this when I do the reorder this month. The gastro's ofc left a msg to schedule an appt for her (not endoscopy), but I am so thoroughly annoyed that they have given me such a difficult time about this that I would prefer not to deal with them. To my eye it is very obvious that you can just slide the whole tip off and replace it. And Brian - I believe it is held in with a balloon. I find it really exhausting to have to explain bulbar-onset als to what seems like every single one of my mom's drs. Thanks again, Trina
 

rosec

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We have replaced the valve a couple times on my PALS' PEG. First time it was done by a nurse from the pharmacy co that supplies the formula. Once I saw how easy it was, the next time, I replaced it myself. We got the valve from Amazon, got an extra one for next time.
I also got a cleaning tool for the tube from amazon. It is a 40 cm long thin plastic snake with a tiny brush at the tip. It is called "Bard PEG Cleaning brush". The packaging says Rx only, but I did not need any Rx. Cost is about $10. I think if I try to buy through our insurance, my co-pay will be more than that!
 
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