Tuesday, June 23, 2009

little sprout

that's kaia's name for the day. So far, she's got: butterfly, little bean, little lion, lady bug and little sprout. I make up a new one every few days. She's resting right now...something she hasn't gotten much of due to the number of doctors testing everything on her person and respiratory therapists working to open her collapsed lung again. I swear, every time she is just falling asleep, they have to do her vibes again. Vibes are the respiratory therapists coming in, turning up her tidal volume on the resp. machine and basically massaging her chest with a vibrator wand and then suctioning out her lungs. Kaia likes all the parts except the suctioning. It makes her feel like she's not breathing and she freaks out. Then we have a crying fit that takes time to settle down. then she'll settle and they have to do it again. Poor babes hasn't slept all day, it seems.

She's had a helluva time peeing today too. She's very swollen again...just when she was back to her normal size she had to go and aspirate, almost die and then swell up again. She's now on lasix again, which helps her pee and shed that water weight. It also makes her shed her electrolytes, so they then have to pump her with extra potassium and some other junk.

So, she's had a collapsed lung again. That right one just doesn't want to stay open. But they were able to get it back open today, which is great. It's been collapsed for days now. But she does have two pockets of fluid at the bottom of each lung that they are watching. Those have to go down or they will put drains through her side to drain them. Hopefully that won't happen! I won't let it.

They are watching her labs to make sure her kidneys are still working. She's on so many drugs and isn't peeing, so they were worried that her kidneys might start to fail. Her liver is swollen right now, but that is because of her heart failure sunday night/monday morning. It should go down once the lasix kicks in more.

She has a bladder infection, which is not helping her peeing problem. She's on antibiotics for that. I've also heard "UTI", so i think it spread to her urinary tract. Hmmm, what else? I think that's enough for today. I'm whooped and had a huge bout of crying today. So, I'm feeling very emptied right now of emotion and I have very tired eyes.

Eric brought up a good point today that, though we aren't able to be home and do normal parenting with a healthy child (which, i hope that everyone with healthy children knows how lucky they are), we are learning how we have to be parents by monitoring her so closely while in the hospital. Our job right now, as parents, is to be the eyes that are the only ones on her 24/7 and report what we see. After noticing some inconsistencies with her care and some questionable actions that could have potentially saved her from aspirating the other night, we have to know her the best that we can and know her reactions to certain things and not be scared to report them. That is our role. We are being normal parents...and this is our normal. I love him.

Love you all! xoxo


  1. Hi Sweethearts,

    The two of you probably know your little Kaia better in the last four weeks, than alot of parents know their children in a lifetime. You are both wonderful parents! And Kaia already knows that:)

    Stay strong and know that Al & I are here for you!

    God Bless you all, and we Love you!
    Aunt Tina

  2. I love you. That's all. After reading all that, just sending out lots & lots of love-love-love.