Wednesday, June 24, 2009

Down Baby Down

Aviana's head pressure is slowly but surely dropping. In an hour and a half, she will have been off medication for her head pressure for 48 hours total. She has been maintaining between 19 and 21. We are so incredibly happy about this. While visiting tonight they said once she maintains under 20 for a 24 hour period they will turn the paralysis medication off, and within 30 minutes she will no longer be affected by it.

They will then slowly ween her off of the sedation medication. They said it could take a while for her to wake up from then on. She is on the maximum amount of this medication. Once off sedation, a wide range of things can happen. Our nurse said some children wake up and are trying to rip the tubes out of themselves, and others don't do much. Dave and I looked at each other with a knowing look and proceeded to tell the nurse we believe she will be the one pulling the stuff out! In our hearts we are just praying she acts in this manner. I can't even think of the makes me cry.

On another good note, our nurse said Aviana's lungs sound absolutely fabulous (her exact words) today. She said they sound better than they have ever sounded. The respiratory doctor came in while we were there, looked at all of her numbers, listened and agreed completely. All very good news today : )

Our day went well and our spirits were high, at times insanely high. It sure feels good, to feel good. I have been alternating days like clockwork....good....bad....good....bad. Dave is going into the office for a couple of hours tomorrow and I am bound and determined to wake up positive, and stay that way throughout the day! Wish me luck.


  1. Such good news! I hope today brings more!!

  2. oops, I meant to post my comment here instead of the Mickey post. I am Happy that Mickey showed up though :) But I'm Happier about the Positive
    update even more. I'm over the moon. Go Avi Go.......


  3. I am extremely happy about the positive too. My little Guatemalan Flowers may be the one showing us how things are done when she is in charge.

  4. That is some exciting news, if Aviana is anything like my little girls, tubes and wires will be, she is always on my mind and I am sure you will look back one day as a part of your life that will change you from here on out. The value of life is always taken for granted. Also my daughter thinks Aviana looks like Dora the Explorer, very funny.

  5. SGT Merenda - YOU ROCK! thank you for saving my little cousin!! (oops, here come the tears) And to the other man (sorry, I fogot your name) thank you for helping my uncle Gary!!

    Jen and Dave - so happy to hear that things are finally looking up. Prayers that they keep looking better and better each day! Remember to practice patience and trust in the docs, and trust in God. Get your rest and stay strong!

    Hugs to you all, including Brenda and Gary!!

  6. I'm doing kartwheels! Very good news!! Hang in there Jen hang on tight!
    BTW- Mickey looks delicious and cute at the same time. How awesome!

    Lots of love,