Hi Liz
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<br />It's entirely possible that I am confusing you with someone else, but if I remember correctly, our girls are seen at the same clinic - CHW, Milwaukee. If that's not you, I apologize.
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<br />Emily has had her tube for about 15 months now, and it seems like she's always had it. It's just second nature now, and we really don't think too much of it anymore. It certainly doesn't slow her down or keep her from enjoying anything that other kids her age enjoy. I, too, was convinced that she'd pull it out on the playground. For months before she got it (while I was vehemently opposed to it...) I used to watch her scramble up the slide and rock wall and think "NO WAY! How am I going to be able to keep her off these things if she gets a tube?" No need to worry. She is still as active as ever.
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<br />Our hospital stay when she got it was just overnight. It was a pretty crappy experience, but not because of the tube itself. Getting it put in was quick and easy. I don't think Emily really had much discomfort once the anesthesia wore off. SHe was groggy until late in the day after we came home, but after that, she was good as new.
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<br />The crappy part of the stay had more to do with the fact that our nurses, etc. had little knowledge of the tube she received, less knoledge of CF, and only a little more about gi issues. There was just general poor communication among hte staff, and the overnight period resulted in MANY mix ups, things not happening, and a tube that would not function, because no one but me thought that some of the equipment was missing. Once that all got straightend out by our CF team in the morning, we were good to go.
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<br />Getting the tube was, hands down, the best thing we could have done for Emily. Her weight gain has NOT been spectacular, like some people report. She has gainied slowly and consisently, and is now at the 50th %ile, however. The tube is just no big deal, and I look back at how terrified I was, and wonder what the fuss was. Really.
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<br />I do remember how hard it was. I HATED the idea. I avoided it, I tried to get a second opinion from the clinic at Madison...I wanted nothing to do with the tube. But, here it is, and my Emily is thriving.
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<br />If you are who I think you are <img src="i/expressions/face-icon-small-wink.gif" border="0"> you don't live in my immediate area. You're "south of the border." But, if you are ever in the area (I'm about 25 - 35 minutes north of CHW, you are welcome to spend a morning or afternoon here checking things out for yourself. To see the pump, the supplies, the tube itself, the kits that you need to change the tube...I really think it helps to see it all first hand. We were able to do that for another local family from the clinic. It was reassuring for them, and their older non-cf daughter. If you wanted to bring Rubie, I'd send Emily out to a neighbor's house. YOu wouldn't see her tube, that way, but I"ll take good pictures of it. At least you could see the stuff, and ask any questions. I know that the other family's 6 year old (no cf) had lots of really really insigful questions that I would have never thought to address, otherwise. The invitation is open. Let me know if you are in the area and interested.
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<br />Good luck on Jan 22, and with this decision. I wish NONE of us ever had to face this. But, if you have to, just know that it's been well worth it for us.
