Mic-Key Buttons 101

[Hugespongebob98]

Spongebob are you kidding me

[calleynw]

This video was very helpful. Thank you for making it and sharing it!

[docmuss76]

Im an doctor:general surgeon and specialized in endoscopic procedure.the most commen leak causes are that the stomach to skin distance is too far and that the required mearured tiem is not placed correct.the ballon pops because of the too highly inflated ballon.

mickey buttom correct measurement and proper inflated ballon are the key too success

[sugarmel55]

im not a doctor or anything but im pretty sure its 5 ccs instead of 6....that way the balloons dont pop as easily

[evewalleghost]

she is so cute

[keenandwhat009]

2:24 to 2:29 why are you keeping this button that as you said yourself has a hole in it? to use at another time? i don't understand? shouldn't this one and the others you are keeping with holes in be discarded and not safe to use. Have you spoke to a doctor about all these leaks she keeps having maybe they can help you.

[patyrish]

@keenandwhat009 Let me explain. Stomas close up if something is not in them at all times. Even if it's just a few minutes it begins to close. Our insurance company will ONLY pay for ONE button every FOUR months. So if her button malfunctions, breaks before that four months are up....WE ARE SCREWED. We have had to TAPE buttons into her stomach before waiting for an overnight order of a new one because the one that was in her stomach malfunctioned.....cont...

[patyrish]

@patyrish.......we have also had to go down in size or up in size and when that happens and I don't have a brand new one in the correct size then I at least have SOMETHING to put in there to hold the stoma OPEN rather then letting it close and having to do surgery. We have seen SEVERAL doctors, been inpatient and seen a stoma nurse and NO ONE can tell us why Makily leaks like she does or why she pops balloons like she does. At one point the leaking was so severe she DID have to....cont....

[patyrish]

@patyrish have the button removed, an NJ tube placed, then the G tube redone three months later.....It's not like we can go to Walgreens and get a new button whenever we need. So I keep two or three of the old ones, I STERILIZE THEM so I have it on hand just in case.

[k47111]

she was rockin' and rollin' both of you are so brave i know ive said this on every video but she is so beautiful!

are you all interested in having another baby?

[UFAkefe100]

our daughters have lots in common... she has a brain disorder called agenesis of the corpus callosum and has a genetic disease of an unbalanced chromosomes 3 and 4 she is also gtube fed shes 100% gtube dependant and i loved this video.. she has had her gtube since she was 6 months and i have not yet changed it her doctors give me a hard time and say i need to start changing them instead of waitting for her GI appointments. I will try it next month its due for a change. Thanks for posting this

[SuperGABRIELLA13]

well patyrish i have a g-tube and i think its getting to small for me and i need another size but thnx alot :)

[azncaramel69]

We recently learned that trisomy 22 is rare if not almost incompatible with life. Her mandibular problems commonly associated with the Pierre-Robin sequence do not seem to be present or prominent. Were they surgically corrected at birth? Also, what is her anticipated lifespan?

[patyrish]

She has Partial Trisomy 22 not FULL trisomy 22. Yes, FULL trisomy 22 is almost always fatal. Kids with PT 22 have many of the same problems though just not as severe. She was born w/PRS and a cleft palate (cleft repair at 18 mo) Her airway is very "short and anterior" and she also has laryngotrachealmalacia. Thankfully we have avoided a trache and jaw distraction (though both were mentioned at one point). Since this is a rare disorder life span is unknown and we have no statistics.

[boriyankee21]

thank for the video..it made me more comfortable to changing my sons boton...how do you sterilize them because i have the same problem with insuranse and i dont have anything to put on if he loses it..thx for the video again and by the way u have a beautiful daughter...

[patyrish]

Aww thanks I am glad my video helped you feel more comfortable. That's why I did it for other parents who have to do this stuff.

To sterilize them I boil water, then I place the button in the water for about 10 minutes. After that I put it in a zip lock bag and label it with the size of the button. It may not be PERFECTLY sterile but it's close.

[ranmik3]

that is just so interesting and to you it is just a routine? I am assuming this causes her no pain.. which I am thankful for... she seems to be such a happy little girl....

[patyrish]

Hi thanks for your comment. Yes it's just become routine but it's not always been that way. I used to get so nervous when I had to change it that I shook and cried while I did it. I've had four years to adjust ya know?

Like I told Jassie, I think it probably feels really strange. She cries sometimes when we change it and other times like this one she seems like it doesnt bother her at all.

[patmarch281958]

Thank you so much for this Video. You bless me

♥♥♥Grandmom Pat

[jjcoolr]

hii (:

im a 14 yr old male with a micky butten,

ive had it in a few weeks,

it hasn't been changed as yet,

does anyone know what i can expect it to feel like.??.,

please reply ive been fretting over this scince after the longer tube.

thanx (:

Jordan xx

[Shaunam83]

I don't know what it feels like because I don't have one, but my daughter seemed to be in a little pain for the first few changes and now she doesn't even seem to notice. I wouldn't think there would be a lot of pain, but I would prepare for some discomfort and maybe weird sensations.

[Jassie26]

That looks like it is painful. Could that hole that you put the button in ever close up? Makily is so brave!

[patyrish]

Yes Jassie it could close up if we took the tube out and left it out.

It does look really painful and I think sometimes it hurts and other times it doesnt. This particular time she did great but other times she has screamed her head off through the entire process :-( According to the doctors it should NOT hurt but they don't have a tube in their belly so how do they know!?