First of all I congratulate you on the adoption of this wonderful little girl who so obviously need a Mother that would advocate for her. I cannot imagine the fears and anxiety her health issues are causing both of you and I am keeping you in my prayers if that is OK?
The hallmark signs and symptoms of cystic fibrosis are salty tasting skin poor growth and poor weight gain despite a normal food intake, accumulation of thick, sticky mucus, frequent chest infections, and coughing or shortness of breath. It appears your daughter needs more testing and fighting insurance companies is a tough one, but you just keep at it and you have my support.
The lungs of individuals with cystic fibrosis are colonized and infected by bacteria from an early age. These bacteria, which often spread among individuals with CF, thrive in the altered mucus, which collects in the small airways of the lungs. This mucus leads to the formation of bacterial microenvironments known as biofilms that are difficult for immune cells and antibiotics to penetrate. Viscous secretions and persistent respiratory infections repeatedly damage the lung by gradually remodeling the airways, which makes infection even more difficult to eradicate.
Not sure what kind of access you have but from what I have read, Cincinnati Hospital is now among the small handful of elite CF centers for children. If their is anyway you could talk to someone there about your daughter it may be helpful.
I wish I had more answers for you as I can't think of another chronic illness that asks so much of families and is so difficult for the children. I have a friend who has moved from our area, however, she and her husband have 2 children with CF and one child that is perfectly fine. She and her husband are both nurses and work 12 hour shifts opposite of each other to care for their children.
I wish you peace and hope other members will have some answers for you.
~~Kitt~~Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease. "She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."