Saturday, June 22, 2013
holding pattern
The pedi palli nurse got a hold of the GI doc last night. He said to hang tight over the weekend and use the extension tube to plug up the port. I'll call his office on Monday. I'm guessing this thing needs to be replaced (rather than use an annoying temporary fix for 3 months). I suppose the next questions are: Do we think this one is simply defective and get another Mic-Key? Or do we go back to the devil that we know? I'll update on Monday.
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6 comments:
We've found that mic key buttons tend to blow the valve after a few weeks then you need to always either cap them or have an extension hooked up or they leak. This has been our experience the last 3 years he's had one.
Just got a Mickey GJ last week & valve is still good.
Sorry.. Probably not what u wanted to hear.
Amanda! Thank you so much. The GI seemed really surprised it was leaking (according to the pedi Palli nurse). So what happens when the valve blows? Do you get the mic-key replaced? Why continue to use them? Can you email me?
We keep using them, since we only get a new Mickey button every 3 months. When the valve goes, then it just leaks if its not capped & no extension is hooked up.
I've never mentioned it to GI actually, but other P2P moms had said it happens to them too.
When he only had a G, it was always hooked to an extension since he's on continuous anyways. Now that he has a GJ, I wish each port had its own cover tab. But I guess if the valve goes now, we'll just have to keep extensions hooked to each port.
We've always had a Mickey after his initial long tube healed & was switched out to a button.
(Couldn't figure out how to email you)
Also, we're having the same problem with the GJ bring tighter against his skin & rubbing it raw. Do you use cloth g tube pads? His stoma is oozy, but I think it's because they went up in French size & stretched it. It's still tender, he winces when I hook up extensions or pick him up.
He got it placed on June 14, & has been having a lot of problems with gagging & vomiting when running formula or meds through the J or G. Today was his best day so far, no vomiting at all. We need to work on getting back up to his regular rate & volume.
Ironically, we switched from a G to a GJ to prevent vomiting & dehydration.
And one last thought, our Children's only does them under sedation. They almost wouldn't place his last week because he was already really sick & lethargic & they were super worried about sedation, but in the end did it be sure we couldn't leave without it since he wasn't tolerating feeds anyways.
Gotcha. Sent you a pm on p2p.
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