Sunday, February 08, 2009
update on Ashton
As some of you may know we have been in the hospital with Ashton twice recently. Since the only updates a lot of you get are "through the grapevine" I thought I would post a little info here. At birth Ashton tested positive as a carrier for Cystic Fibrosis. They did a sweat test to determine if her sweat chloride levels indicated that she actually had cf. This is a diagnostic test and should tell you if a person has the disease. They tested both arms and to be positive your levels have to be above 60. One arm was 65 and on was 60.8. Normally if a child has cf they see levels in the 80s to 100s. So, we waited 48 hours and did another. Your levels have to be under 40 to be negative, between 40 and 59 is inconclusive. Her numbers this time were in the 50s. So, we are now in the 5th week of waiting for the genetic sequencing to come back and let us know whether or not she actually has cf. In the meantime, we have been told to treat her as if she does and we do an inhaler and cpt (chest physical therapy) twice a day unless she is sick, then it is 4 times a day. We were admited to Children's for evaluation of her and education for us to learn how to care for a cf child. Tues I took her to her pediatrician for a cold and ended up traveling by ambulance to Children's. (This was policy only, she wasn't actually sick enough to really need an ambulance. That is what they told me anyway.) She has RSV. This is not a fun illness anyway, and the presumption that she has cf made them even more careful. So, we came home on Friday. She is still very sick from the RSV, but she will recover. Nothing like a trip to Children's to show you just how sick your child is NOT. We continue to beleive that she DOES NOT have CF. She has NO symptoms, and apparently they are having trouble finding what they need to find to diagnose her officially anyway. Thanks everyone for your prayers, and we hope to update with GREAT news about how our God works soon!