Well, well, well... what do we have here??? Oh yes, this is Matthew's little mic key button! :-/This is becoming a daily occurrence these days. *smirk* I thought he was napping on my bed ... but he had actually slid off my bed, on his tummy and ripped out his mic key. As I walk in the room, I can smell it immediately and his shirt and shorts are sopping wet. I had fed him a little bit earlier.
Uh, ya... this is real fun... it smells rotten and it's all over Matthew and the carpet. I clean Matthew all up, then I deflate the balloon on the mic key ... slather it w/ KY and put it back in. He was being quite difficult today... tightening up his tummy... fighting me .... and I have this goey slimey mic key in my hand trying to put it back in. With one hand mind you. *l0l* I had the hardest time w/o Mikey here. You only have a small window (about an hour or two) to get these things back in or you go to the ER for a radiologist to put back in, since it's going thru his stomach wall. The dreaded ER!! YUK!! Luckily for us... we feed him every 2 to 3 hours... so chances of that are pretty slim.
So, I go grab a tube of handy dandy KY jelly... a couple syringes. I keep this with me at all times... it's in my diaper bag, up in Beaver in our trailer and my parents motorhome and at the Baxters. I save all my old mic keys for emergencies since our insurance only pays for one every three months. I like to keep them "just in case". They are quite pricey. We've had several spring leaks and they just fall out.
I started using an Ace bandage ... I have the self sticking kind and the kind w/ the clips. It helps "some"... but the mic key has still come out with this wrapped around him, like a girdle. It's the best we can do ...unless there is something else!! Who knows what else there could possible be!
He freaks out over the little clips... don't know why, I've never hurt him w/ the clips ... the big goof ball... anyway... I keep them in my mouth until it's time to attach to the back. *big sigh*
The life and times of mic key parents. This is part of why we can't leave him with "just anyone"... only family that has been trained... and our Tanji girl in Beaver.
After all the fun, I rewarded myself w/ a bunch of cookies I shouldn't have eaten. DOH!
My "heart mom" friend Kathy, Isaac's mommy is having the same kind of issues. Sure glad we have each other .... we can all relate.
12 comments:
so when will mr. matthew decide to eat without this thing!? is that the million dollar question? ;) but i can tell you this, matthew's chest sure does look good - mason's is all jacked up esp with the "bump"...
lisa
He was actually doing good on sampling...
but then he got sick.. so now forget it..
anyway..
YES, Matthew's chest looks awesome doesn't it!! We got extrememly lucky.. after the two surgeries..
I hope it continues to stay that way after his next surgeries...
you can barely see his "special zipper" and the rib cage grew back together perfectly!!
I was just feeling in between his little collar bone today and it's perfect.
I will ask Mayman what causes that "bump" when I see him Thursday...
I cared for a wee girl for 2.6 years who was fed through a gastrostomy too.. luckily I only ever had to put her key back in twice in all that time! I would hate to have to be doing it all the time! Poor you.... I don't have any suggestions on how to stop it being pulled out so easily either...
Oh, can we relate. I think I had to take Luke to the ER once and then to Dr. Baron's office to have his mic key put back in. Not fun b/c it closes so fast, so then they have to stretch it back out...ouch! Fortunately, it hasn't come out lately. For us it helped when we put more water in the balloon(I'm sure you have already done this).
does he have to have this Mic key in forever? It seems like you have to be so creative to keep it in!
Amy just sent me an email..
they put 6 cc's of water in the balloon...
we still put 4 cc's..
I'll ask Dr. Baron tomorrow if we can put in 6... that just may help!!
THANKS AMY!!
Makes me very grateful that Jacob does not have a mic key - in fact I really feel like we hit the jackpot in heart defects. We have been so lucky.
Hopefully the extra water in the balloon will help - even more hopefully he will turn into an avid eater. :-) By the way, I think the ace bandage idea is ingenious.
Sorry you are having to deal with the mic key stuff. Duct tape? :)
Hopefully it stays where it belongs and that little man starts eating like a monster. Tomorrow!
Hi Terri!
You need to give yourself a BIG BIG hug!!! You are super mom! As your forever faithful former NICU nurse, love -Jeni
i agree completely with your anonymous nurse above....you are FABULOUS!!! i know you well my dear, and i know you are patient and firm, loving and reassuring....not just anyone can do what you do, so please, big hugs to yourself and family. any sick grumpy child is a pain in the patootie, and i know you handle it all with your usual flair and laughter...hang in there SUPERMOM!!! i am certain that all heart moms and dads are super parents....otherwise God would not give them these special little ones to their care.
love you guys! antinesi
This is my "biggest" fear wheneven babysitting. Matthew is such an active little boy and bounces around like a rubber ball. I give mom and dad a lot of credit because they seem to deal with the "missing mic key" button often these days. That band cannot be too much fun; but what a clever idea.....
I always wondered how active kiddos would keep there buttons in. Guess I see now that it's not so simple. I hope you find a solution soon.
Hugs,
Vanessa
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