Mic-Key Buttons 101
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Uploaded by patyrish on Sep 16, 2008
Makily having her Mic-Key button changed.
Makily is a four year old little girl living with Emanuel Syndrome (ES). ES is a trisomy of the 22nd chromosome. It is very rare and causes many medical and developmental problems.
Makily having Emanuel Syndrome caused several birth defects including Pierre Robin Sequence, a cleft of the hard and soft palate, suck swallow breathe discoordination and hypotonia (and more). All of these conditions make it VERY hard for her to safely eat orally so she is fed via a G tube.
To learn more about Makily please visit our family blog at
www.mynewnormal.blogspot.com
**any negative or hurtfully ignorant comments left about this video will be immediately removed and you will be blocked*
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Uploader Comments (patyrish)
All Comments (19)
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Spongebob are you kidding me
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This video was very helpful. Thank you for making it and sharing it!
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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
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im not a doctor or anything but im pretty sure its 5 ccs instead of 6....that way the balloons dont pop as easily
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she is so cute
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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?
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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.
keenandwhat009 1 year ago
@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 1 year ago
@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 1 year ago
@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.
patyrish 1 year ago
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?
azncaramel69 3 years ago
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.
patyrish 3 years ago