This is Vera's new button.
After nearly 2 years of dealing with the Bard and its various issues, we finally made the switch to a Mickey.
Here's a low-down of the pros and cons.
What we like about the Bard:
1) It is flat and flushed with the tummy. Good for tummy time.
What we don't like about the Bard:
1) There is a one-way valve inside that loosens with wear and tear. It can also be damaged by over-venting over time. Alas, Vera needs frequent venting because the bi-pap blows air into her tummy.
2) Particles (powdery suspension medicines, milk that's not dissolved properly, fibrous fluids, can clog up the holes if water flushing is not done thoroughly.
I believe this is what happened this time round.
Medications that Vera was on post-op clogged up the button and forced the valve shut. It because almost impossible to syringe more medication through. The more force we used, the more damage it was causing to the valve.
After I did some trouble-shooting with Coke, the blockage cleared, and we were able to feed medication without resistance. But by then the valve was probably gone.
Once the feeding tip was removed, the button would leak.
I had hoped the problem would resolve by itself back home. Afterall, it was a relatively new button, just 3 months old.
But today, fluid started to pour out when the flap was opened. From experience, I had a feeling it was a goner. So to hospital we went.
3) Each time the Bard is replaced, we have to deal with over-granulation for at least 2 weeks. Burning with silver nitrate, sloughing it off, watching it bleed...yucks. We've done it for 3 rounds. Today I just thought: No more.
What we like about the Mickey:
1) No more valve problems - there isn't one!
2) No more clogging - I don't have to freak out over medications causing blockage (my sanity back!)
3) No pain for Vera during replacement.
What we don't like about the Mickey:
1) It protrudes more than the Bard. We'll have to wait and see if this will interfere with Vera's tummy rolls, which she does quite a bit when left on her own.
2) The water-filled balloon can burst or deflate. When that happens, the button will pop out. Milk will be EVERYWHERE. Bed, car seat, wherever. However, I will be able to learn how to replace it on my own. Or we can tape it down bring her to the hospital to get it changed.
3) The feeding tube is short. Vera's hand can easily swipe the syringe and causing spillage.
Well, I guess it was a case of "give me something, anything!" because the stress of dealing with Bard problems was just getting too much for me.
It's Vera's lifeline - she takes nothing by mouth - so I do freak out a bit when there are problems with it.
I'm under no illusions that there won't be problems with the Mickey. But fingers crossed we have a better experience with it.
16 November 2010
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3 comments:
good luck!
welcome to the mickey button club.We also had enough of bard.
I was wondering how come you don't have a feeding machine for her? My Isabella just turn 2 with full trisomy 18, and has had the michey tube since she is 9 months, we have been so blessed because her site looks really good, at least that's what the doctors tell me. Don't worry changing it is very easy, you will become an expert. As far as rolling, let me tell you that one of Isabella's favorite thing is to be on the floor and she has had no problem with the tube. Good luck and God bless you.
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