4/22/09 - "Our Sweet Little Girl"

After a long and emotional day, we were able to gather some information about Kayleigh's prognosis to pass along to everyone.

A CT-scan was completed this afternoon to determine what may be the cause to Kayleigh's shocking lack of brain functions. It appears there was a lack of blood and/or oxygen supply to the brain during or shortly after her surgery this past week. The other option is that Kayleigh had a pre-existing condition that worsened with the surgery. However, the latter of the two can be cancelled out as there were no obvious issues that can relate to the problems she is having now.

Being that Kayleigh had two blood transfusions this past week and a very low blood pressure number tells me that the problem may be with the lack of oxygen/blood to the brain, but no one is for certain at this time. The doctors still want to see how her body reacts with time, but Aimee and I are pushing for other tests to be done in case there is a reason and it could be something that may be fixed. Time may hurt us if we just sit back and wait to see how Kayleigh reacts. Aimee and I asked for the CT-scan to be done and that is why it was performed today. Even if they may feel nothing can fix the damage that is done, we at least want some answers.

If you look at the bright side of things, Kayleigh is coming down more on her settings. Her oxygen is practically at room temperature, she has been able to get the pain meds out of her system, her blood pressure is normal, and she is not desatting at all. She has woken up and moved around, but the blank stare in her eyes and the repetitive movement in her limbs quickly tells you there is something seriously wrong.

She did react to our voices and seemed to kick her legs a little more, but none of her movements show any kind of purpose. Before, she would reach for her mouth and suck on her fingers, she would grab for her toys, or she would grip your finger when you held her hand. Now, there isn't anymore of that happening and it breaks our heart to see her in this condition.

If time is to determine what is wrong and if things don't progress, we can only hope that Kayleigh's brain will allow her to breath on her own. Starting tonight, the doctors are going to wean her pressure control to see if her body can breath without the help. If she can't breath on her own, then Kayleigh's future prognosis is not going to be good news at all.

It was a blessing for Aimee and I to hold her for several hours and talk to her about many things, such as her big sisters birthday tonight and what bacon tastes like since that helped with her progress in December. We talked about playing at home one day and how fun it will be to have the whole family together. We talked for hours about everything so she could hear our voice and know that no matter what, she will be okay.

We have not lost hope and we trust that God has a huge plan for Kayleigh. He has done many wonderful things with her so far, but we would be sad to see Kayleigh go and not be able to personally share her story for the rest of her life. Although, If God has plans for her in heaven, Aimee and I promise with all that we have, we will continue to share her story to help others through their own journey.

"Kayleigh, you are such a blessing to us and we are forever grateful to have you in our lives. Your Mommy and I could not be more proud of you for the strength and determination you have showed us in the past year. We are all much better people because of you and we love you so very much. May you continue to fight this fight as hard as you can and know that our Lord is holding your hand every step of the way. We are so blessed and honored to call you our sweet little girl."

Thank you all for your overwhelming support through these difficult times. Your words of encouragement have lifted us up throughout the day to stay strong and continue to be there for Kayleigh while she fights for her life.

God Bless,