Friday, June 13, 2008

Mic-key button issues...

Ever since Charlie had her tube changed from a peg to a mic-key, we've had tons of problems. The first one leaked from day one and also wouldn't vent. We called the company and they sent us a new one and we sent back the old one. That one worked fine for 3 months and started leaking, but it was time to change it anyway. Then the new one also wouldn't vent. I don't remember if it leaked or not. Called the company, got another one, it did exactly the same thing. The third one seemed to be fine but after 2 weeks, it came out. Our nurse thought she accidently tugged it out, but she also said it seemd to come out very easily.

So the day before yesterday, Tim was watching the kids while I pumped and after a while I heard Adrian yelling for me. I waited until I finished pumping before I went down because I thought surely whatever it was, Tim could handle it.... I was wrong. LOL

I got down there and Charlie was in her crib crying and her button was in her swing with the pump still running. Tim was freaking out. This is no big deal to me, but he doesn't handle her button much at all, aside from just hooking up her feed, so he didn't know what the heck to do. So I just shut off her pump, washed the button and stuck it back in her. I thought there was slightly less water in the balloon than there should have been...about 4 mls, but it shouldn't have just come out. I questioned Tim and he swore up and down that nobody had accidently tugged it out. Adrian had been playing quietly on the other side of the room and he hadn't even picked Charlie up since she had been sitting quietly in her swing (which wasn't turned on by the way, so that didn't contribute to it). I guess I didn't truly believe can a button just fall out!? But even if he had accidently tugged it out, I wasn't mad since we've all done happens.

So that night I put Charlie to bed in a snug onesie. She was asleep at her usual time with no problems. No fussing, no squirming. At about 4:30am, he pump beeped and I stopped it and restarted it. Sometimes it just acts weird for no reason. But some time later I woke up because I just felt something wasn't right. I checked on her and she was soaked. I thought her diaper had leaked, but nope...her button was out again! The little booger didn't even cry! She was just laying there...awake, but not fussy. So I turned on the light and put it back in. It must have been out a while because the hole had already started to close up. I had to hurt her, but I'd rather her be in some pain than have to have surgery again! So I got it back in and she fell back asleep and slept the hole night.

I called GI and they said to bring her in because it is very odd for a button to just start falling out like that. Especially with 4-5 mls of water in it! So we got there and no one can see anything worng. Her tube site looks fine, right size button, everything looked normal. They changed the button anyways since we didn't have an extra one at home. So far, so good, it seems to be staying in. The nurse did say that the button looked a little lopsided but that still doesn't explain why it would fall out. We also got scripts for more buttons and connective tubing, which we've been fighting for for a while.

I'd rather forget the mic-keys and just use regular tubes, but the ones they send us don't have clamps and we need clamps. We have way too many accidents when there's no clamp. So I guess we're stuck with what we have for now. I'd like to think we've just had bad luck with the mic-keys, but the GI nurse said these problems are common. So we'll just have to figure out what works and hope that Charlie doesn't need a nissen because I absolutely won't consent to that if her buttons won't vent. For those of you who don't know, a nissen prevent vomiting, but it also won't let you burp. So what you do is open the tube to let it "vent" the air out. If she gets a nissen and her mic-key malfunctions, she will be in a world of pain.

This is a mic-key button. The balloon at the bottom is filled with water and that is what holds the button in place. The balloon is about as big around as a nickel and her stoma is about as big around as a pea. I still don't know why she didn't cry when it fell out.

1 comment:

Kathryn said...

Have you thought about using the ELF button? They're doing trials right now, so it would be totally free to try.