We have just been told that the results of Ashley's Cystic Fibrosis tests are negative! Even though we were given the same result before coming to Omaha, just the idea that they thought she might have it made me so nervous. I am thanking God for allowing us to not have this disease.
Today has been a tough one in Ashley's room. They still have not managed to get her blood pressure down to the desired levels. We are having to be extremely quiet when we are in with her. We don't talk, or turn on the T.V, or make any noise. She is responding to the sounds of our voices by showing an elevated heart rate and blood pressure. It has been very difficult for me not to talk to her all day. I usually spend my days kissing her head and her fingers, singing her songs, and telling her how much she is loved. Today just the sounds of our voices are causing her to become more stressed. She is still paralyzed and not able to move or open her eyes. It makes me so sad to know that she is trapped inside of her own body and she is not able to communicate to us what she needs. Hopefully they will be able to remove the paralytic in just a couple more days. She has developed a fairly large air leak in her breathing tube. They are keeping a close eye on it and we are praying it does not have to be removed and replaced. The trauma caused to her throat when she has to be intubated makes me nervous. The blade usually causes her to bleed for a couple of days when they suction her.
Our Ashley is so beautiful. I know it is hard to see past all of the trauma that the swelling has caused, but when I look at her I still see beauty. She is still my sweet Ashley even though you can't recognize her. She is snuggled into her bed with her gray kitty cat holding the ventilator tubing off of her chest, and she is covered up with some of her favorite pink blankets. Her pink CD player is softly playing Silent Night in the background. When I sit next to her I see the magnificent work of the Creator, and I am so humbled to be allowed to love this little one.
Thank you all for praying for our Ashley today. I know this is a very busy season for everyone and to know that you pause during your day to pray for our family blesses me so very much. Although we are so far away from everyone, we are excited to know that the joy of His birth, and the excitement of His season will keep us close to you all in our hearts. Take care and Merry Christmas! Trish