**Please see bottom of this post for urgent update on Reese Kostjuk**
So Friday morning when I walked in the door from dropping Makily off at school the phone was ringing.
Her button had come out.......balloon deflated and when they checked it, there was a hole in the balloon.
I've been here before...sigh.
I go through my used but saved buttons because of course her new "spare" was in her tummy. If you recall our insurance will only pay for a button every three months.
I found a good used button checked the balloon, sterilized it, checked the balloon again and it was fine.
I rush to the school, the NURSE also checks the balloon to make sure it has no leaks and I put the button in. Makily didn't cry at all. She was such a good girl.
I called Apria and started the process of getting a button overnighted to me. Since we had just gotten one a month ago insurance was NOT going to pay for it...we would have to pay out of pocket. There was confusion on how much the button would cost $33 vs. $240....no I'm not kidding. So I was told they would call me back with a price.
So at 2:04 I am sitting in the blasted car line to pick Makily up from school (I HATE the car line by the way but who doesn't?). My cell rings it's the nurse THE DAMN BUTTON IS OUT AGAIN!!! She said she checked the balloon and there is NOW A HOLE IN IT!!!!
She taped the button in and I picked Makily up from school.
I call Apria again and after arguing over the price, sitting on hold for what felt like an hour they tell me they will GIVE it to me for $91 with no charge for overnighting it. I said "well I have no choice, here's my credit card number".
We got the button yesterday and I put it in. Makily had done so well on Friday with the changes I finally got up the courage to do a video about the button and changing it. Andrea had done one and I really thought it was a cool idea. I know there is a lot of anxiety as a NEW g tube parent when you have to put a button in the first few times. I hope watching this video will help another family feel more comfortable about doing it themselves.
**URGENT: PLEASE VISIT REESIE KOSTJUK'S SITE**
Reese is NOT doing well, is back in the hospital and they are not sure if she will pull through this time. Please visit her site and offer words of comfort, peace and encouragement for her family during this HORRIBLY trying and difficult time.
We love you and are praying FERVENTLY Ashley and Todd.
VISIT REESE CLICK HERE
So Friday morning when I walked in the door from dropping Makily off at school the phone was ringing.
Her button had come out.......balloon deflated and when they checked it, there was a hole in the balloon.
I've been here before...sigh.
I go through my used but saved buttons because of course her new "spare" was in her tummy. If you recall our insurance will only pay for a button every three months.
I found a good used button checked the balloon, sterilized it, checked the balloon again and it was fine.
I rush to the school, the NURSE also checks the balloon to make sure it has no leaks and I put the button in. Makily didn't cry at all. She was such a good girl.
I called Apria and started the process of getting a button overnighted to me. Since we had just gotten one a month ago insurance was NOT going to pay for it...we would have to pay out of pocket. There was confusion on how much the button would cost $33 vs. $240....no I'm not kidding. So I was told they would call me back with a price.
So at 2:04 I am sitting in the blasted car line to pick Makily up from school (I HATE the car line by the way but who doesn't?). My cell rings it's the nurse THE DAMN BUTTON IS OUT AGAIN!!! She said she checked the balloon and there is NOW A HOLE IN IT!!!!
She taped the button in and I picked Makily up from school.
I call Apria again and after arguing over the price, sitting on hold for what felt like an hour they tell me they will GIVE it to me for $91 with no charge for overnighting it. I said "well I have no choice, here's my credit card number".
We got the button yesterday and I put it in. Makily had done so well on Friday with the changes I finally got up the courage to do a video about the button and changing it. Andrea had done one and I really thought it was a cool idea. I know there is a lot of anxiety as a NEW g tube parent when you have to put a button in the first few times. I hope watching this video will help another family feel more comfortable about doing it themselves.
**URGENT: PLEASE VISIT REESIE KOSTJUK'S SITE**
Reese is NOT doing well, is back in the hospital and they are not sure if she will pull through this time. Please visit her site and offer words of comfort, peace and encouragement for her family during this HORRIBLY trying and difficult time.
We love you and are praying FERVENTLY Ashley and Todd.
VISIT REESE CLICK HERE
10 comments:
We have had a problem with button balloons puncturing - not the same make as yours. The manufacturer has taken the defective one back and replaced it with a working one as it has apparently been a manufacturing fault. It might be worth complaining about them and seeing if they will agree to exchange if they keep happening? Even just one would help.
Tia
What size is she in? I may have an extra I could give you, if our girls are in the same size...comment on my blog to let me know.
I wish Gracie would be calm like that...she screams which makes it sooooo hard to get the new one in!
Girl...mickey drama. Great video. Although I was disappointed to see that you didn't present yourself with no makeup like I did. LOL. Also..I was curious what size she was in as well? Curious why it keeps popping? She was soo good. Luke used to be great. Not so anymore. In fact, total meltdown and required me and nurse to hold him down 3 wks ago. Poor bubba. I hate doing that to them..you know?
Also, you didn't mention lubricant. Do you use that to slide it in? We have to do that.
Ohhh, the joy of mikey momma's! We are so on top of our game..aren't we? No nurse can mess with us!
andrea!
omg girl I totally almost did the "no makeup" VLOG. It was WAY more frightening than yours could EVER have been so that portion was cut in editing LOLOL
Yes we use lubricant....I did mention it at one point (I say something like I am getting the KY ready and then later I say I am wiping off the excess KY cause I use alot).
She is in a 20 FR 1.7 which actually is big for her age but it's because we have had SO many stoma issues in the past.
I wish someone could tell me why she pops the balloons. I have asked and asked and no one can really give me a concrete answer. VERY FRUSTRATING!
That is amazing to see from someone who has only heard about those things..
And you just seem so calm and laid back...
Thank you for sharing this...
That was so interesting to see what a Mic-key button was and how well you do putting it in, and showing us what you do...Makily is adorable and was so good while you replaced it...
LOL. Ok..so you lube it. I missed that. Probably Luke screaming in the background!
WOW! that is big. Luke is still in a 14fr? I'm curious if I should upgrade to bigger?
hmmm, thinking.
Ok..well, I'm sorry I missed the reality show of Trish via VLOG.
Maybe next time! Your fingers looked nice though. Manicured and clean. I look for that stuff. :) LOL!
hugs
Oh boy, what a mess! Grr... I hate how insurance companies are!
Well, My name is Violet and I have been following your blog for awhile. I am 22 and have worked with special needs kids a lot, including being a nanny for a little boy with severe cerebral palsy and epilepsy.
I know you've been fighting with your insurance for a special bed for your daughter and I'm praying you get it!!!
I saw something really cool on another blog, it was a day bed that was turned around so the open part faced the wall. It looked kind of like a "picket fence" with no spaced between the bars. With it turned around, it looked like a really safe bed. Maybe you can look at the picture and see if something like that might work for M. It's about the 15th picture over in this slide show.....
http://www.slide.com/r/r8zu0fwG5z8ROPaGQShPna65L7rHIDIl?cy=bb
WOW...if that is a big button size for her age....what is Gracie's deal. She is in a 20fr 2.0.....I get one every other month....We don't go through them that quickly...I have two in boxes at this point.
You are COMPLETELY welcome to have my extras if you want....just let me know. :^)
my name is Lydian Miller and I work for a company called Applied Medical Technology. I am always surfing the net, and I ran across your blog....Please let me help you!!! We manufacture a product that is similar to the Mic-Key, but with a lot of significant differences. I think you would get better results with our items. You can get our product through Aria. Please give me a call at 800-869-7382 ext 231, and just let me know that I left you a message on your blog, and I will help you out. Looking forward to speaking with you soon....
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