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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 04-09-2013, 04:21 PM   #1
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all4mom HB Userall4mom HB Userall4mom HB User
Jpeg tube questions

I am all4mom -- still! I should say, morethanever4mom, actually, as I'm now on an official leave of absence from my job to care for her exclusively and full-time; tried hiring "caregivers," but that's another story for another day...

Hard to believe that it's been a whole year, but back with questions about the JPEG tube, which has now been in place for a WHOLE YEAR. While the visiting nurse tells me they last "indefinitely" and that it "looks fine to her," it's in fact constantly oozing greenish discharge (I clean it daily, but as I reach down with the gauze, I can see that I'm only wiping the surface and that it extends down out of sight; one can only imagine -- with horror -- that it could extend the entire length of the tube???), but I think it needs to be replaced. Parts have gradually broken off (I now keep the end of the bag in the tube with bread twist-ties and am attaching the "ball" plug to the tube via unwaxed dental floss, necessity being the mother of invention), and obviously nothing lasts "forever"; certainly not plastic! She has intermittant diarrhea which can only be explained by a potential infection, as her diet never varies (she's been on a slow-drip continual feed, rate of 50, all year).

I read somewhere before I posted that the discharge should be cultured??? Also, her stoma is often red and inflammed, and she sometimes has "pain."

I should add that the visiting nurse is a HOSPICE nurse; although she's not at death's door, it was the only "home health" we could get and seem to retain... When I asked how one would go about replacing this tube, I was told "you just rip it out"; WHAT??? Isn't there a PEG (hence the name JPEG) on the inside of the stomach wall? If so, wouldn't this cause serious injury?

Not making a move until I do more research! Let me know if you can help...

 
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