Nickolas' first plane ride! Well, we made our trip to the Children's Hospital at UNC last week and we did walk away with a "probable" diagnosis. It's probable because he fits all the areas and the biopsy is what "confirms" it. The problem is, Nickolas' biopsy was too full of blood and mucous for them to confirm it. There are only two things that could give a positive in some of the other tests they ran and we know, for sure, it's not one (several negative tests already)....so they're listing him as Primary Ciliary Dyskinesia or PCD.
We'll go to UNC again next year where they'll re-try the biopsy to get the confirmation. For now, we left with a list of about 25 different things to do for Nickolas. We'll see his pulminologist tomorrow and begin crossing things off.
It's a lot to take in and we received a lot of information from everyone, including the Geneticist. Some of it is a little too private to share outside of our four walls because of how it can impact Nickolas later in life, but I know many will have questions, so here's the link to the PCD Foundation's site where you can read all about it:
http://pcdfoundation.org/aboutpcd/about_pcd.html
We've found a lot of the information there helpful and we look forward to connecting with other families just like us.
We're thankful to have some answers, but frightful of the road ahead. We can definitely use your prayers and uplifting thoughts as we move through the next few months and cross things off our "to do" list from Dr. Pittman.
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