Sat Up For The First Time Today

I came back from lunch and Bailey was sitting in a recliner in her room! They were changing her bed to a more comfortable one, and she took a few steps to the recliner. She sat there about 20-30 minutes when she said it was hard and she wanted back in bed. The VAD is taking some getting used to. She doesn't want to see it, but I see her peeking when they change her dressing twice a day. I got to tell her today that we met the German doctor who brought the VAD over and showed her his business card and the picture we got of him. (I'm trying to figure out how to post pictures on here. I'm not sure how to get it from my memory stick to the blog page.) She's drinking really well, but not much hungry anymore. The doctors are trying to "put the puzzle pieces together" now that she's off the ventilator and feeling much better. She, once again, is "one of a kind". Her PA pressure was in the 40's last week while on the ventilator but has been in the low 100's the past two days. They made an adjustment on the VAD this afternoon (did an echo and said the right side can take more, so they increased the flow) and the pressures have fallen steadily into the 70's. That makes me feel much better. But I won't be surprised if they go up again. They are talking of weening her off the nitric oxide (a gas that keeps her PA pressure down) - also, interesting to note, this is the first time they've given nitric oxide through a mask - they always give it through the ventilator tube. They've apparently given it via mask to adults, but, once again, Bailey is just barreling through uncharted territory - she seems to gravitate to that kind of thing. She's a miracle baby three times over!

She's beginning to converse with all the medical people that come in and out - she already has a date with a respiratory therapist to some Chinese restaurant when she gets out (not sure how that happened - I was at lunch). And a date to Joe's Crab Shack for crab legs with someone else. Child Life Specialists are coming tomorrow to start in on homework to get her caught up. Music therapist is coming tomorrow to play some songs for/with her. And they're working on getting her a stationary bike for exercise when she goes to the Heart Center after ICU - from what I hear, that could be anywhere from a few days to a week from now. She's had wonderful nurses and is finally getting to enjoy them now that she's awake and with it and not seeing things that aren't there anymore.

Well, say a small prayer for another good day tomorrow. We never know what we'll encounter around here!

Love to all, Angie

(P.S. Josie's participating in Jump-Rope-for-Heart at school in honor of Bailey. If anyone would like to contribute, you can send a check to Josie at our home address - which I won't publicize here - by next Monday.)