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The Beerys Dystonia Journal

We hope that this journal will help others better understand one family's journey with Dystonia.

Sunday, May 20, 2012
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21
I took Alexis to Rady's children's hospital today for an endoscopy.  She has been struggling with a night time cough for the past 4+ years and last year it turned into something much more aggressive.  Over the past year+ her cough started up more in the afternoon, extending into the night.  In August of last year, her night time cough turned into a nightmare we were not expecting.  As she lay in bed coughing, she could no longer take the fierceness of whatever was causing her symptoms.  She got up, went into her bathroom and started throwing up blood.  She couldn't move past her bed, she started to lose her breathing ability.  She called us on her cell phone, barely audible, struggling to let us know she was in a state of emergency.  Joe and I ran down the hallway, not prepared for what we would find.  We ran into her room and she couldn't stand up, her mouth was turning blue and it appeared we were starting to lose her.  I called 911 and the paramedics were in our house within 10 minutes.  They slowly got her breathing again, put her on a gurney and wheeled her into the ambulance.  I sat in the front of the ambulance, amazed at how calm Alexis was.  The paramedic who was driving seemed just as effected, knowing this is a 13 year old girl who just went through a life threatening ordeal.  We arrived at the hospital, took chest xrays, blood samples, and they doctor on call could find nothing that helped us understand what was going on with our little girl.  Alexis has been through 4 years of specialists, medications, theories, diagnosis, etc. and, here we are, at the hospital hoping to find out something to explain her inexplainable, consistent coughing.