another day

well, i'm posting early tonight because nothing is going to change today. Nothing was weened off of her. Nothing was turned down. Nothing has changed. She hasn't slept a wink today, and she finally just dozed off. I had to turn away the respiratory therapist so Kaia could sleep. She'll be back in 20 minutes. 20 minutes? That's all they're letting her sleep? I've successfully kept the nurses from giving her morphine all day. She's doing fine on tylenol and some tweaks in her position and clean diapers (she HATES soiled diapers...will NOT tolerate!). She had an echo on her heart today that showed a narrowing of a vessel that is not allowing a steady flow of blood to her lungs. They're gonna watch it closely to see if it's a problem. Let's hope it's not, because we can't do another surgery right now. Heck no.

I had a meeting with all of her doctors today. There were 7 of them from all areas of the spectrum. I voiced all of our concerns about the excessive X-rays (like 3/day) and they are going to do one big one each day instead of all these separate ones. She's had over 100 at this point. I'm worried about radiation in her little body. I put the nix on morphine and other heavy hitting drugs that she doesn't need. And I requested more and better communication. they were all super helpful and supportive of our wishes.

Looks like we will be here for several more weeks though. We were originally supposed to be out probably today, but by friday. Now we are here for way longer since her arrest the other night. Please pray for a speedy recovery so we can cut our stay down to a week or two! I can't stand it here. It's so depressing.

thank you all for all the supportive comments and for reading. I am still amazed by how many people care what happens to her, when not many of you have ever met her. She's a precious little wonder, and I am amazed by her strength and tolerance.