Monday, August 24, 2009

The Day is Ending Better Than it Started

At 3:15 am I woke with a start, looked at the baby monitor and something didn't feel right so I went to Bri's room. She was restless, rolling back and forth, moaning a little bit. When I picked her up, she was warm, clammy, sweaty. Her oxygen level was good but I noticed that her heart rate was climbing and climbing and climbing and although she was just laying in her bed, she was breathing like she had just finished running a race. The monitor alarms when her heart rate reaches 160, well, it alarmed, I pressed the silent button (works for 60 seconds), alarmed again, silenced it again, alarm, well, that is how it went for quite some time. By the second alarm Jerry had joined me in her room. We were giving her oxygen but that did nothing to slow down the heart rate. There we are sitting in the dark, on the floor, holding Brianna, praying, praying, praying that if it is her time, take her quickly and without pain. After an hour of the three of us on the floor, two of us obsessed with the numbers on the machine, the third being just trying to slow down from the "race", we negotiated. I laid down for an hour while Jerry kept vigil, then Jerry slept while I kept vigil. After several hours of the high heart rate (into the 170's) Brianna rested.

We have kept the oxygen on her continuously since then. There were several times today when it appeared that she was starting to have an episode but then it subsided.

Thank you to the many friends who came by to visit with us today. We feel blessed that God has given us this time to prepare (yeah, right, huh) and for our many friends and family to visit with Brianna while she is still here on this earth. She continues to be a happy, smiley little girl. God has been so good.

On another note, wonderful news. We have often talked about the idea of starting a non-profit organization to help families like ours, receive respite care. Sadly, there are too many families who don't qualify for any government/organization programs to help families cope with situations like ours. We plan to change that. Our organization is: Brianna Gives Hope. We will be posting more information as it developes. Many thanks to those who helped us make it a reality. We are looking forward to our first Golf Tournament and Motorcycle Poker Run.

Anyway, Brianna is in bed, I am watching her on the monitor and listening to her babble (while I also listen to my husband snore...lol. God bless that man. My heart breaks for him. His only natural daughter, and he has to watch her die. Breaks my heart.

The oxygen has given Brianna new strength. For how long we don't know but we will take whatever we can get.

Here's Brianna on her swing last week. Oh how she loves the wind in her face.



Goodnight.

10 comments:

  1. brianna looks so happy on e swing! her smiles are truly priceless!

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  2. Maijken from OregonAugust 25, 2009 at 6:53 AM

    what a tremendous smile she has. such spirit. so precious and wonderful.

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  3. You are going through the hardest journey I can imagine. My thoughts are with Brianna and your entire family. Here's hoping for a miracle!!

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  4. I am so, so, so sorry that Brianna is having a tough time, and that you as her parents feel helpless. I know all too well what it's like to watch the deterioration and face all the decisions. My daughter was born in March and we didn't know until the day of her birth that she had T-18. I am truly inspired to see a little one with this diagnosis who has overcome the odds. Keep fighting, Brianna! Lots of strength coming your way.

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  5. Brianna is such an inspiration, and her smiles give us strength. You're all in our prayers, and in our hearts.

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  6. We both wish we could help with what your family needs right now,all John and I can give you is support. Don't be afraid God is watching over the little angel and when he is ready you will know. Enjoy every second of every day to fill your hearts with her memories and your faith in God will help you in the toughest of times. Love John & Dee

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  7. My thoughts and my heart continues to be with you through this most difficult yet most precious of times. Thank you for showing all of us the appreciation of life through your love of Brianna.

    Lots of love is being sent your way.

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  8. A beautiful picture of Brianna - she looks so happy. To me it really captures her essence, a free-spirit, nothing holds her down, expressing her joy. WOW! Amazing what we learn from our children, they really are our teachers.

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  9. Oh Brenda, How I love to see a new post but almost can't stand to read. I am glad she has more energy. Know that we are praying for what is to be! Praying for you and Jerry and your rest! Give her big hugs from Texas.

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  10. I am thinking of you and your family Brenda and praying for your lil angel Brianna.With love, Darlene and Max Laguna

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