Mic-key peg is loose

[4mymom]

Hi all,

It's been a few weeks since I've been able to post, but here I am...needing advice from any PALS that have the mic-key style button peg.

The other day, my father (who does most of the feedings), noticed Mom's peg tube was loose. Loose in the sense that the button itself was able to move pretty freely from side to side. The placement of her tube is in the center of her chest and at the base of her sternum, and when she is sitting in her PWC, the natural fold of her skin has helped to hold it in place...if that makes sense. With that high placement, we have had very little leaking from any feedings or while giving medications. Nonetheless we need to get this corrected. From what I've read it sounds like the silicone retention balloon on the inside of the stomach has deflated. I'm trying to find a luer slip syringe to actually check the volume of the balloon but have not found one yet. (Apparently, one was supposed to be provided for us as part of the mic-key "kit"?) ...Well that didn't happen, so here we are.

It sounds like this is something we can remedy at home by refilling the balloon with a specified amount of distilled water or saline solution, but I would love to hear from someone who may have had the same experience. Thanks in advance for any advice or opinions!

 

[julie28]

it sounds as if the balloon has as you say become deflated. this needs to be checked about every fortnight , according to local protocol.. sometimes low profile feeding devices such as mic-Key buttons can move in and out more freely if there has been weight loss and new measurements may need to be taken. the 5ml luer slip syringe should have been in the new mic-Key pack. i would contact whoever provides your equipment , here ii is the dietitian, for further supplies and advice. the tube could also need replacing . some depts recommend it is changed every 3 months , others leave longer and replace when needed. i hope this is of use, good luck. p.s i dont want to sound pickey but a mic-Key isnt a PEG tube. the reason i say that is because it is often recorded as a PEG by some health professionals and this causes confusion. kind regards.

 

[joelc]

It sounds like it is the balloon that has become deflated. The balloon could also have sprung a leak. So once you get the necessary syringe to check it do it every second day so you will know if the balloon is okay or not.

 

[4mymom]

Thanks for the input Julie and Joe. After doing a little more research, I was shocked at how little our "provider" shared with us regarding the care and maintenance of the mic-key. Julie, you're right...they reference the mic-key button and peg tube as the same thing here. It's very frustrating trying to get accurate information when the medical community (that we are locally a part of) doesn't distinguish more clearly between the two. The other side of that being that they seem to be speaking down to you, like a child, for not using "the proper terminology" ...when they themselves have dictated the language to use. Shew...I can feel my blood pressure going up! :-x

We'll check the balloon once I can get my hands on a syringe. We were never told to check it, nor was the luer syringe ever sent with any packets....some provider, huh?

Thanks again!

 

[stephie]

My husband's mic-key tube also got quite loose a few months ago. We went in to the ER where they discovered that the balloon was torn and almost disintegrated. Needless to say, he got a new one put in the same day. The tube was still working fine, but it definitely needed replacing.

 

[julie28]

hi 4mymom
it sounds as if you havent been given much support at all. as a dietitian myself we always ensured patients were fully trained and especially in how to check the balloon inflation. it is fairly simplle with training. and prolongs the life of the tube which in turn is cost effective. i am upset for you at the lack of info and support. in the trust i worked in ,the patients had the support of dietitian and company nurse , we also ran a monthly PEG clinic in which we saw all types of feeding tubes . you have enough to deal with without all these probs. all the best to you and your mom.

 

[brooksea]

Chris, I found a pack of ten for $15 at Amazon. Guess you could order from them in a pinch.

I'm with ya on the medical "professionals!"

 

[4mymom]

Just an update...

While waiting on the syringe to get her, Mom's tube fell out. I don't have time to get into all the complications...only that now she is worse off than she was. Tired, weak, no color, and is only able to take the bipap off for a couple of minutes at a time. She's been sick for the last couple of days also, to the point she's threw up the couple of times that she physically could...and you all know how dangerous that is.

I would assume this new tube (not a mic-key because they didn't have her size in stock) is upsetting her stomach. Just stretching...do you all believe her formula may need changed? She's been on the same Isosource 1.5 the whole time and has never had any problems previously, but could this tube somehow affect that in its delivery? Any thoughts or ideas are much appreciated. I can't imagine how she feels, being sick, on top of ALS...I just want to get her better ASAP!

 

[whipsawed]

Help!

Am a new member and have been diagnosed with PMA/MND. With that in mind and thinking of my shortened future I find myself in need of a cheap care facility (I have no one to care for me) and must rely on whatever social services can supply. Took a buyout from my employer and am not eligible for pension payments...

Am down to my last $80,000 and receive $2000 monthly in social security benefits. Have been placed on Medicare parts A and B with medigap insurance with United Health Care.

Am trying to find a place to live while I'm still able to move around without chair and/or other devices. Currently I'm renting a room and am expected to leave.

Am willing to relocate to any part of the USA. (once considered Mexico because rumor has it that one could live will on $2000 a month but that does not include healthcare costs and Medicare would be ineffective south of the border).

Does anyone know of any facilities that may be of any help given my situation? Thanks

Good luck all - have been a reader of this forum and my prayers go out to all.

 

[whipsawed]

Help again...

Have no idea as to how to start a new thread on this forum.

Can someone please explain.

Thanks

 

[julie28]

hi 4mymom
i am so sorry to hear your mum has been unwell , she has been thro a pretty traumatic time.
i assume your mother has been given a balloon replacement gastrostomy tube. provided this is the same bore as the mic-Key tube this shouldnt stretch her stoma or cause any probs. also if she has been on the same feed for sometime its unlikely that the feed would cause probs now. i would ask your doctor to check her out in case she has picked up a bug; could she be constipated? could she have slow gastric emptying? [if so there are meds which could speed this up], perhaps if she is on bolus feeds via syringe trying a feeding pump set at a low rate may help. if she is vomitting she is likely to need additional fluids . she really needs to see her doctor. if all else fails then perhaps try a different feed.
just a few suggestions . all the best.

 

[brooksea]

Chris, I'm sorry about your mom! I tried to find the website where I read about this exact problem with the tube. I can't find it now. Sounds like she needs to go to the "doc!"

Whipsawed, go to the upper left and you will see a place to click: New Thread.

 

[whipsawed]

thank you for the thread info...

 

[abbas child]

whipsawed, I wrote you a message on your profile page to answer... to get there, go to the top of this page and click on your name.

It is confusing at first. But, there's also at the top of the page, in the blue bar, "FAQ", and if you go there, at the top, "general" category, there is a section on "General Forum Usage". Click on it and see "forums, threads, and posts." It covers your question, also.
Ann