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.