Today Kaidence is pretty darn wiped out. She is pretty weak and in a lot of pain with the pleurisy. We have come down from 8 liters of high flow oxygen to 5 liters of high flow. It sounds like she has a hurricane in her nose. We are starting up tube feeds tonight because she is not eating, but I cannot blame her. Her echo yesterday looked the same, so hopefully her heart will hold up well with this infection. Tomorrow she will have another chest xray. If the pneumonia still looks consolidated then they will go into her lung and scrape out all the junk and drain it. I am really hoping that things will just look better on their own.
Many are curious what this does to her listing for transplant. As of now they will keep her listed. If they do get a heart offer they will meet together as a team and discuss the risks of transplanting her with this. I think things are heading in the right directions, its just very slowly.
Today her CRP is down from 39 to 29 so that is great. Ideally it should be zero, but we will get there. Her white count has also dropped by half, another good sign that things are trending well. Her blood has shown some clotting issues. They said it's like she is on heparin but she isn't. They are trying to figure out what is causing that issue.
I must say that my heart broke a little the other day at home. Kaidence was sick and the day before we took her into the hospital she asked
K: "Mommy, is my heart coming in a few days"
Me: "Honey, I don't know.....Why?" K: "Because I don't want to be sick anymore"
All I could do was hold her in my lap and say a prayer with my little girl and ask that if a heart is meant to be for her that one will come her way.
All in all we are just hanging out today while Kaidence sleeps. Maybe I can get some reading done today. Thank you all for keeping us in your prayers and for the kind deeds you are doing for my family at home. Much Love to you all!
Primary Childrens Medical Center, Utah, United States
I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!