02-01-2003

Brie has a Mickey button, for fluids. It is one of those things in her life that has made a huge difference for her ( she gets lots of fluids now, doesn't work so hard ot get them in and is so healthy respiratory-wise) and a huge difference for us. We didn't expect the positives for us - it is so easy and convenient (parking lot "drinks", store, even traveling in the car) and so much less time which translates to more free time for us. I wouldn't get one basedon the convenience reasons, but it is a win-win for all of us.

I dreaded one more 'appliance" for her and the un-naturalness of it. But those things haven't really surfaced. Just a bit when it is new and you aren't quite sure exactly how to do it yet. I wished I had known how good it would be. then I wouldn't have dreaded it for so long.

Most meds can go thru the tube, especially liquids. But some dont' crush well in to a powder (her Keppra has an outer layer that doesn't cruch too well).But it is great for the emergency Lorazepam or anything that tastes bad.

I just want to say, if you decide to get one, it is not have to be the end of the world,as I feared. it was just the opposite...a new beginning, a good choice and an easy surgery.

Brie does have a body jacket so we cut a hole in the flap (hers happens to close in the front and ahs a soft flap soit worked out well with the button. Then we just cut slits in her t-shirts she wears under the body jacket.

She does seem more uncomfortable in her stander but they have padded, like a don ut around the button. But I think her discomfort is more likely from her feet, h ips, leg length differences.

We change every 6 months. It is very easy but if a nurse is here, they have help ed.

yes, Brie had the original tube for 6 months, I think, before she got the mickey . Putting the Mickey in was done by the GI but was very quick. No surgery involv ed. Take care, Ann