Tuesday, June 19, 2012

Ventilator Trials... and Tribulations

Overall, Norah is still doing quite well at South Davis. We've been there for three weeks now, and she is still healthy and thriving. We're continuing trials on the Trilogy 100 (photo left), which is the home ventilator. Some days she does pretty darn well, and others... not so much.

I'm not sure if it's the lack of humidity (we tried an HME & it was too difficult for her to breathe through), the larger circuit, AVAPS vs. SIMV, or perhaps just the fact that it's a different feeling machine, but she just isn't consistent with her tolerance of the Trilogy. (I know, so much jargon. Sorry, but some of my readers may know what all that means.) Perhaps we need to tinker with the settings a bit. I just don't know. Her record trial on the Trilogy lasted 50 minutes, but some days she can't seem to settle into it, and we have to put her back on her Drager when we see that, for whatever reason, she just isn't going to tolerate the trial. These ups and downs are to be expected, and prove that we still have a long road ahead. We do our best to remain optimistic.

In other news, her oral feedings have been going well. In fact, she officially said her first word - well - her first sign, "eat". We let her try "puffs" for the first time (they're like Cheerios, but they dissolve easier) since she's been working on the pincer grasp with her fingers. She didn't know what to think of the chunks in her mouth, but she did seem to be interested in it. When they stuck to her fingers, she shook her hands like crazy to get them off. It was pretty cute. We're going to start increasing her oral feeds a bit, moving from therapeutic to nutritive. Once she can handle some bigger bites, we'll head back to PCMC for a swallow study. And don't worry, PICU peeps, we'll always be sure to visit the unit when we're in the neighborhood!

Norah playing with the best daddy ever on Father's Day. Thanks to therapies, dedication, and Norah's hard work, she is getting stronger every day.

Really tuckered out after a difficult Trilogy trial. My sweet girl is getting so big! I love that little bum!

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