We just replaced Makily's mic-key button a week ago Friday.
Remember the one we had to pay $91 out of pocket for?
Well last night Allen was getting ready to put Makily to bed and out pops the Mic-Key button....balloon deflated and all.
I check the balloon and would you believe that there was a pin sized hole in it and the water was shooting straight out the side.
If I didn't live this, I swear I wouldn't believe it myself.
I storm around the house screaming things like
"Where the &*@@ is the KY jelly?"
"WHY THE ****** DOES THIS ALWAYS HAPPEN"?
"I CAN'T FIND ANY SYRINGES, I CAN NEVER FIND ANYTHING!"
"I HATE EVERYTHING!"
"WHY DOES MAKILY HAVE TO GO THROUGH THIS ALL THE FREAKING TIME?"
(there were many expletives used but I chose to with hold them here:-)
Allen just sat holding gauze on Doodles tummy while I ranted and raved while searching for all the stuff I needed to put back in the faulty button.
So it was NOT easy like the last time. She screamed like a maniac (probably because I had just finished storming around the house while ranting and raving) What a great mom I am. Once it was in Allen held Makily while I went into our bedroom and BAWLED while saying "my poor baby" and "WHY" over and over again. Then it struck me that I sounded a lot like Nancy Kerrigan and decided to get it together.
pathetic.
I wipe my face and go into Makily's room where Allen is feverishly trying to get Spongebob on for Doodles. He gets it going, I pick her up and rock her....she sees SpongeBob and calms down. Allen gets the tape so we can tape the thing in. He puts the first piece of tape on, he didn't do it the way I thought it should be done so I scream at him. He screams back and now we are having an all out war of words. Me telling him he's stupid and him telling me.....well he was telling me how very nice I am and that he would like me to take a nice trip (read between the lines :-)
Then Makily starts crying....again which makes me feel like total a*s crack so then I am telling her that no one is mad and that everyone is happy and we are both sorry and we will shut up. She calmed down and then I just held her in a heap and bawled my head off while saying "mommy's okay, mommy's okay" over and over.
really pathetic.
So then of course Allen and I both apologize to each other. We both know we are just taking it all out on each other. You desperately want someone to blast in moments like these and unfortunately we end up blasting each other at times.
A few minutes later we are talking about the button and about how it's freaking regularly $240+ and that we got lucky last time that they only charged us $91. Then I thought about how CRAPPY it is that they charge all that money for a piece of plastic with a balloon on the end.
What kind of person wants to make money off of someone who needs a FEEDING TUBE TO SURVIVE!?!?!?
I said "Ya know Allen I wish I had a huge closet full of mic-key buttons so we didn't have to worry about this ever again"!
Then the reality of how pathetic that sounds hit me.
When did my life become so jacked up that I find myself fantasizing about closets full of feeding tubes?
At what point did that become normal to me?
My reality REALLY sucks at times.
Then Allen and I discussed alternative brands of buttons. Cost is not the issue as they all cost basically the same. The BARD button does not have a balloon but has more of a "mushroom" on the end. They tried to switch Makily to a BARD when she was little and I still have visions of a 300+ lb GROWN MAN standing over Makily trying desperately to jam that thing in. I had to stop him because I thought he would going to break her in half. The "mushroom" does not collapse on this thing. So to get it in they use something called an obturator.
Here is a picture of one:
Makes ya just feel all warm and fuzzy inside doesn't it?!
They insert the obturator into the "feeding port" of the button which then stretches out the mushroom as thin as possible, then the whole thing is jammed into the stoma.
Sounds like a ton of fun eh?
This is a picture of a BARD BUTTON with various accessories. The button is on the left side of the picture. It's the thing with yellow tip sticking out of it. That is the "handle" of the obturator. As you can see it's already inserted into the feeding port ready to be JAMMED into an unsuspecting G tube kid. It is then stretched the length of the obturator (like a sling shot?). I don't know if I am explaining it well or not.
I can only imagine how painful it must be to have this done and Makily would not get any sedation to have this placed. When the guy tried to put this button in her in the past he did use a small amount of lidocaine jelly but I don't think it did much to help with the pain.
If it were to begin leaking (and we all know Makily is a leaky kid) I could not change it myself. If it was accidentally pulled out I could not place it back in either. They say these buttons almost never get pulled out but Makily is always the kid that does what NO OTHER child does. We are TWO HOURS away from a Children's Hospital that would be able to put it back in. Due to the way it's placed, the use of the obturator and the force involved in pushing it in they do not teach or allow parents to put them in.
Makily's stoma closes fast.
I don't like NOT having the option of being able to just put the thing back in. Granted we could throw a foley cath in the stoma but I can just imagine us being back and forth to Orlando over this button.
So honestly I am not sure what to do. Allen is really against the bard and I have always been too. My biggest concern is really in the way it is placed....it looks so barbaric and painful. On the other hand if it never came out or leaked or popped that would sure be nice.
Once again, here we are at the cross roads of two choice.....both of which SUCK.
On a brighter note I called Kimberly Clark today. They are the manufacturer's of the Mic-Key button. I was very monotone when I spoke with the lady. I explained what was going on and that the button before this only lasted for five weeks but that I had not called on that one because I know their "rule of thumb" is if it has been in for four weeks or more they will not call it "defective" or replace it.
She asked me a couple of questions. Then asked what Makily's diagnosis was. I told her and of course she had never heard of it so she asked me to explain it. I did. Then she asked if I had any other children. I told her no and that I was a carrier for her condition and that we are fostering to HOPEFULLY adopt Little J. She went on and on about how great that was. She was really being nice but honestly I just wanted to cry. ANYWAY she said that she would send me TWO replacements and I said "OMG SERIOUSLY"? like I had won the freaking lotto. She said yes that the "five week button" was "borderline" but she was going to send me a replacement for that. She said she could hear the frustration in my voice. I thanked her a million times and was about to cry. It was AWESOME to speak to someone who was understanding and kind today I REALLY needed that. I get so many people that work in the medical field that don't really give a damn. This lady cared.
Her name was Mary.
Thank you Mary.
For now Makily's button is taped into her tummy.
Mary is overnighting the two replacements.
Remember the one we had to pay $91 out of pocket for?
Well last night Allen was getting ready to put Makily to bed and out pops the Mic-Key button....balloon deflated and all.
I check the balloon and would you believe that there was a pin sized hole in it and the water was shooting straight out the side.
If I didn't live this, I swear I wouldn't believe it myself.
I storm around the house screaming things like
"Where the &*@@ is the KY jelly?"
"WHY THE ****** DOES THIS ALWAYS HAPPEN"?
"I CAN'T FIND ANY SYRINGES, I CAN NEVER FIND ANYTHING!"
"I HATE EVERYTHING!"
"WHY DOES MAKILY HAVE TO GO THROUGH THIS ALL THE FREAKING TIME?"
(there were many expletives used but I chose to with hold them here:-)
Allen just sat holding gauze on Doodles tummy while I ranted and raved while searching for all the stuff I needed to put back in the faulty button.
So it was NOT easy like the last time. She screamed like a maniac (probably because I had just finished storming around the house while ranting and raving) What a great mom I am. Once it was in Allen held Makily while I went into our bedroom and BAWLED while saying "my poor baby" and "WHY" over and over again. Then it struck me that I sounded a lot like Nancy Kerrigan and decided to get it together.
pathetic.
I wipe my face and go into Makily's room where Allen is feverishly trying to get Spongebob on for Doodles. He gets it going, I pick her up and rock her....she sees SpongeBob and calms down. Allen gets the tape so we can tape the thing in. He puts the first piece of tape on, he didn't do it the way I thought it should be done so I scream at him. He screams back and now we are having an all out war of words. Me telling him he's stupid and him telling me.....well he was telling me how very nice I am and that he would like me to take a nice trip (read between the lines :-)
Then Makily starts crying....again which makes me feel like total a*s crack so then I am telling her that no one is mad and that everyone is happy and we are both sorry and we will shut up. She calmed down and then I just held her in a heap and bawled my head off while saying "mommy's okay, mommy's okay" over and over.
really pathetic.
So then of course Allen and I both apologize to each other. We both know we are just taking it all out on each other. You desperately want someone to blast in moments like these and unfortunately we end up blasting each other at times.
A few minutes later we are talking about the button and about how it's freaking regularly $240+ and that we got lucky last time that they only charged us $91. Then I thought about how CRAPPY it is that they charge all that money for a piece of plastic with a balloon on the end.
What kind of person wants to make money off of someone who needs a FEEDING TUBE TO SURVIVE!?!?!?
I said "Ya know Allen I wish I had a huge closet full of mic-key buttons so we didn't have to worry about this ever again"!
Then the reality of how pathetic that sounds hit me.
When did my life become so jacked up that I find myself fantasizing about closets full of feeding tubes?
At what point did that become normal to me?
My reality REALLY sucks at times.
Then Allen and I discussed alternative brands of buttons. Cost is not the issue as they all cost basically the same. The BARD button does not have a balloon but has more of a "mushroom" on the end. They tried to switch Makily to a BARD when she was little and I still have visions of a 300+ lb GROWN MAN standing over Makily trying desperately to jam that thing in. I had to stop him because I thought he would going to break her in half. The "mushroom" does not collapse on this thing. So to get it in they use something called an obturator.
Here is a picture of one:
Makes ya just feel all warm and fuzzy inside doesn't it?!
They insert the obturator into the "feeding port" of the button which then stretches out the mushroom as thin as possible, then the whole thing is jammed into the stoma.
Sounds like a ton of fun eh?
This is a picture of a BARD BUTTON with various accessories. The button is on the left side of the picture. It's the thing with yellow tip sticking out of it. That is the "handle" of the obturator. As you can see it's already inserted into the feeding port ready to be JAMMED into an unsuspecting G tube kid. It is then stretched the length of the obturator (like a sling shot?). I don't know if I am explaining it well or not.
I can only imagine how painful it must be to have this done and Makily would not get any sedation to have this placed. When the guy tried to put this button in her in the past he did use a small amount of lidocaine jelly but I don't think it did much to help with the pain.
If it were to begin leaking (and we all know Makily is a leaky kid) I could not change it myself. If it was accidentally pulled out I could not place it back in either. They say these buttons almost never get pulled out but Makily is always the kid that does what NO OTHER child does. We are TWO HOURS away from a Children's Hospital that would be able to put it back in. Due to the way it's placed, the use of the obturator and the force involved in pushing it in they do not teach or allow parents to put them in.
Makily's stoma closes fast.
I don't like NOT having the option of being able to just put the thing back in. Granted we could throw a foley cath in the stoma but I can just imagine us being back and forth to Orlando over this button.
So honestly I am not sure what to do. Allen is really against the bard and I have always been too. My biggest concern is really in the way it is placed....it looks so barbaric and painful. On the other hand if it never came out or leaked or popped that would sure be nice.
Once again, here we are at the cross roads of two choice.....both of which SUCK.
On a brighter note I called Kimberly Clark today. They are the manufacturer's of the Mic-Key button. I was very monotone when I spoke with the lady. I explained what was going on and that the button before this only lasted for five weeks but that I had not called on that one because I know their "rule of thumb" is if it has been in for four weeks or more they will not call it "defective" or replace it.
She asked me a couple of questions. Then asked what Makily's diagnosis was. I told her and of course she had never heard of it so she asked me to explain it. I did. Then she asked if I had any other children. I told her no and that I was a carrier for her condition and that we are fostering to HOPEFULLY adopt Little J. She went on and on about how great that was. She was really being nice but honestly I just wanted to cry. ANYWAY she said that she would send me TWO replacements and I said "OMG SERIOUSLY"? like I had won the freaking lotto. She said yes that the "five week button" was "borderline" but she was going to send me a replacement for that. She said she could hear the frustration in my voice. I thanked her a million times and was about to cry. It was AWESOME to speak to someone who was understanding and kind today I REALLY needed that. I get so many people that work in the medical field that don't really give a damn. This lady cared.
Her name was Mary.
Thank you Mary.
For now Makily's button is taped into her tummy.
Mary is overnighting the two replacements.
