Anyone get a mic key?

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Littletsunshine

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Learn about ALS
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Niles
I have a blog post that explains my current situation(not als but other rare Nero condition) but anyone get a Mickey vs peg? I have autistic 4 yr olds that climb on me and I fear peg being ripped out.. Thanks
 
My understanding is that you have to wait for the mickey. It can't be the first one put in. I am not sure why. I am sure someone that knows more than I will chime in.
 
Thanks for the response..for some reason my blog post didn't save. I need to find a bio spot but will have to fight it another day.
 
LS, there has probably been a fair bit of discussion on this.

Try the Search function.
 
is a Mic Key racist?

O'no,

pat
 
Hi, yes I've a MicKey button and never had issues with it.

My kids were young when I had it done and often sat on my lap (now only the dog sits on my lap :( ) They are robust.

Most hospitals first put in a tube until the stoma tract is fully formed - 6+ weeks - but some will initially place a button.
 
Patoyeah
Your comment is not appreciated nor taken with the humor the moderators have claimed it was made in. I already feel alone and terrified and am facing leaving my disabled 4 year olds motherless. I was scared to ask questions and this was my first and last post now asking for help. Hope it was worth it. getting a feeding tube early im told may extend time but my last emergency surgery left me in great pain. This to me is a big deal. to me it was just mean and minimized what i am going through.
 
Rather than being upset about a joke made by a PALS who is quadriplegic and using his eyes to type, do see there was some good replies.

I am in Australia so didn't reply as things are different in the US.

You should talk to your own doctors about whether or not they will put in a mic key at the start or if you have to start with the regular peg as it seems it is doctor preference so it's hard for us to say if you can start that way or not.

I hope you did search as there are many discussions here on the benefits of different types.

You need a good surgeon.
When we had the tube replaced with a mic key (and we wanted a bard but that's another story) it was done by a rough surgeon who was in a hurry and we had 2 months of hell. When our surgeon who is not rough, replaced it with the bard, all problems stopped straight away. Not because it was a bard, but because he did the procedure well.

Best of luck with whatever condition you have, I wonder if you would mind telling us what it is?
 
Patoyeah
Your comment is not appreciated nor taken with the humor the moderators have claimed it was made in. I already feel alone and terrified and am facing leaving my disabled 4 year olds motherless. I was scared to ask questions and this was my first and last post now asking for help. Hope it was worth it. getting a feeding tube early im told may extend time but my last emergency surgery left me in great pain. This to me is a big deal. to me it was just mean and minimized what i am going through.

Littletsunshine, all our PALS know the fear of leaving family behind. We all know that these diseases are a big deal. I'm glad to read in your blog that ALS is ruled out. Sorry to hear that you might have SPS.

We can't help you with SPS. Hope you can find the right forum to support you.

Patoyeah, FWIW, I thought it was funny.
 
Strange. You can't see that blog from her profile, but if you go to the "BLOGS" link next to the "USER CP" menu, you can see it.
 
for those who asked SPS plus ive lost the use of my left side 3x. Ischemic strokes are thought to be the cause and each time my cns seems to freak out. I had tachycardia the first time, the third time i had bradycardia and when i would fall asleep the code team would keep rushing in because my heart rate would drop so low they thought i was coding. I would startld and it would go up. The sps is more recent and is widespread. Without the baclofen anc valium the muscles in my chest amd diaphram can expand enough to let me breathe properly and i have esopogeal spasms to the point where my saliva can't be swallowed much less the pills i need to make me possibly functional. I have referras to multie places but things run slow and around here you wait months to see specialist so i was trying to research and go in preared. Many of the interventions for what im looking at are used in als such as feeding tubes, bipap etc. there are few or no places or communities that would face the same rounds of testing, medical equpitmen medications etc as what i am facing. At this point im waiting on the pulmonologist, gi, sleep study, just had emg and eeg and have another month anx a half to get into cleveland clinic movement disorder group despite being interally referred.
 
Als was suspected because the sps hit hard and rapidly progressed. I have fallen so many times ive broken 7 bones, sprained both ankles and my knee.
Im sorry if i offended someone but clearly asking about a feeding tube i did not expect off handed humor when all this is going on.
 
Mic key are used with pediatric patients. I think you will be fine
 
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