Wednesday, March 2, 2011

Back To The Beginning: CF Sucks Part 1

Rewind 3 1/2 years.  Brock and I welcomed Brady to the world on July 26, 2007.  The pregnancy had been planned and we were thrilled to start a family of our own.  I remember being a little bit surprised when I first saw Brady.  He was beautiful and perfect...but he was so skinny.  I had been such a fat baby, I was just sure that I would have one too.  I brushed it off.  Brady was very fussy, but I never suspected that his pancreas was becoming clogged and his stomach probably hurt from digestive problems.  At Brady's 2 week appointment with the pediatrician, I heard the words "cystic fibrosis" mentioned for the first time.  Well, it may not have been the first time I had heard those words...but it was the first time they applied to my child.  The nurse came in and started to repeat the heel stick test they perform on newborn infants at the hospital.  I asked why she was doing it again and she casually said, "he tested positive on a screening test for cystic fibrosis so we need to repeat it."  Whoa.  Wait, what?  I was by myself at the appointment and still very sleep deprived.  At that time I didn't have any idea what the hell cystic fibrosis was.  It sounded bad.  The Pediatrician tried to answer all my questions and keep me calm, but the screening test was brand new in Idaho and she wasn't exactly sure what the results meant.  The freaking out begins here.  When the second test came back positive, I got the call that we needed to make an appointment for a sweat test at the hospital.  The sweat test is the gold standard diagnostic test for CF. In the meanwhile, Brady had begun to have some pretty serious digestive problems.  He had stopped gaining weight all together and his inability to digest food on its own started becoming apparent.  I started to have this horrible feeling in my heart.  I knew something was terribly wrong...but it couldn't be this.  They were unable to collect enough sweat off his skinny little body to get conclusive results on the test so we decided to run a genetic blood panel on him.  The results would take a couple of days.

Brock usually came home from work for lunch, but he walked in the door early that day...followed by my brother and sister-in-law.  I knew what he had to say to me the moment I saw him.  Brady was wearing a tiny yellow onesie with a duck on it.  That moment will be suspended in my mind for the rest of my life.  I think telling me that news was probably the hardest thing Brock has ever had to do.  All I really remember is hearing myself screaming.  I still wasn't sure what cystic fibrosis meant for us...but I knew that it had suddenly changed everything and that things were going to get hard.  I knew that CF was the #1 genetic killer of children.  I immediately began thinking about having to watch Brady suffer and potentially die.  That was the day that the words "cystic fibrosis" began assaulting my brain like a machine gun.

The next several months were very hard.   Managing Brady's medications and feedings became my full time job and there was a lot to learn.  Unfortunately, many of the things you discover about CF scare the shit out of you.  One of the first horrible things we learned was how to do percussion therapy on our baby (a.k.a. pounding/beating on the Brady's chest and back to loosen the mucous in his lungs). I'm trained in massage therapy, so I was familiar with the techniques already.  This would be a required therapy, indefinitely...or until he was big enough for a Vest.  I cannot describe how horrible it is to have to beat on your child...twice a day...for years.  Brady was actually fine with it.  He often fell asleep during the 15-20 minute sessions.  Brock and I hated it with a passion.  You have to pound hard.  I cried after every time for months. We both developed a form of "carpal tunnel therapy arm syndrome" from the repetitive action of the therapy. We did everything we could to make therapy good and fun and special, but it was still so hard.  I guess I feel that to understand why curing CF is so must first understand why having CF is so crappy.  It has been such a humbling experience for me to see Brady breeze through the things that cause my heart to just collapse.  He is very special and very strong.  I am very lucky.

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