Saturday, June 27, 2009

it just gets worse

The breathing tube came out yesterday for about a half hour before it went back in. It was hard to get it back in, as her throat has had it shoved in there three times so far. It took three more tries to get it in this time. Now I see blood in the tube. She was grunting the whole time it was out, a sign of distress in children. She turned pale white and was breathing so hard. That made them put it back in. An x-ray showed a bunch of fluid surrounding her lungs. We are not sure if the fluid game after they took the tube out or before. But it squished her lungs and made it hard to breath. They put an emergency chest tube in (put a hole in the side of her to drain the fluid...i'd talked about the possibility of this in a previous post). The chest tube has drained over 100 ml of fluid so far and it keeps coming. Her body is producing it and leaking it around her lung walls.

There are 3 different things that can cause this to happen. I forget the first two because they don't think those are it. The third think is a duct that they can nick during surgery that cannot be fixed. This is the worst case scenario.

I didn't post last night because I couldn't see straight. I've never cried so hard in my life. I wanted to curl up and die on the floor. I couldn't stand or sit or walk or breath. This nightmare is never ending. I don't want to, nor know how to do this anymore. I have nothing left. Every day is one step forward and three steps back. It looks like she will not make it through. They keep telling me to not think that yet. I'm not sure how to think otherwise. We need a miracle now. That is what can save her. I do know that I don't know how to live past this.

9 comments:

  1. My heart is breaking for you. This is just too much. But remember- Miracles do happen. They really do and I imagine they have seen many at Rainbow. We are praying and praying for little Kaia and for you and all of the people caring for her. She is a tough cookie and continues to fight. Let's hope today is a better day. Try and just focus on today. God will give you the strength you need - even if you are mad at him...
    Peace, Kate

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  2. I wish I could be there to give you a big hug. As always, my thoughts are with you. You know where I am if you need me.

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  3. God is in the business of miracles, so keep your faith, and your focus. There is a point where the doctors may not be able to know what's going on, but God always does. We will continue to pray for her recovery and strength. We love you.

    Bianca

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  4. I am not sure we know each other, but we both graduated from the same high school in the 90's. I just want you to know that I will be praying for your sweet Kaia. She is beautiful. I pray that God would just touch her and heal her. Know that I am thinking and praying for your family.

    In God's Grace,
    Michelle Joseph Fields

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  5. JUST REMEMBER THAT GOD WILL NOT GIVE YOU MORE THAN YOU CAN HANDLE.. HE WILL ALSO PROVIDE YOU THE STRENGTH TO GET THROUGH ANYTHING.. THATS WHAT I TELL MYSELF ALL THE TIME BECAUSE I HAVE A CHILD WITH DOWN SYNDROME.. I KNOW THAT IT DOES NOT EVEN COME CLOSE TO WHAT YOU ARE GOING THROUGH BUT IT HAS ALWAYS HELPED ME GET THROUGH MY HARD DAYS.. KEEP THE FAITH AND HOPE ALIVE NO MATTER WHAT HAPPENS.. EVERY CHILD IS A GIFT IS THERE OWN SPECIAL WAY..

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  6. Stephanie,
    I can't imagine how tough this is. Just focus on today and stay as positive as possible. That tough little girl is still hanging on and if she's anything like her mommy, she's going to be one hell of a fighter. You just keep telling her every single time you see her that she is super strong and that she can get through this ...we are all praying for little Kaia to get better. We are praying she has the right doctors, is being touched by the right hands and at all times, has God's armor protecting her. Stay in faith, as hard as it is ...God is right there beside you - and He will help guide you through this. At the moments you feel lost and alone, just close your eyes and take a deep breath and let His love surround and rejuvenate you... Love you girl ... Sativa&Derrick

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  7. Our Father who art in heaven...may you be comforted by the grace of God and the love of family and friends. Kaia is a blessing from our Heavenly Father. Love and prayers to you and your family...Betsy

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  8. You don't know me, but I got an update about you from facebook b/c I went to Howland HS too. I wanted to tell you to try to keep your spirits up and pray for the best. Miracles do happen and my son is living proof of that. He was born two months early, had a stroke at birth and was diagnosed with a rare life threatening syndrome shortly after birth. He spent 4 months in the NICU at Cincinnati Children's and has undergone over 15 surgeries. He went intubated for 3 of those months and he eats via a feeding tube. He has fought through every battle and we have seen times when we didn't think he would pull through but he did. He amazed us and the doctors. Miracles are possible and show your little one all the love you have so he knows what to fight for. God bless you all.

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  9. I am also a HHS alumni and wanted to let you know I am following Kaia's story and I am praying for her daily. She seems like a fighter and I pray for God to give you the strength you need to help her fight this battle.
    Cristina Gulacy-Worrel

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