Right before the rug was pulled out from beneath us!

Sunday, April 3, 2011

March 3rd

 March 3rd,  that was the day the rug was pulled out from under me. Who knew what a difference one day can make... everything is the same.... yet it's so different....  1:15 p.m..... the doctor delivered the blowing news that Jake has Hypertrophic Cardiomyopathy.  One minute I was joking around,  taking pictures of my son having an EKG done, and the next minute I had my head in my hands trying to stop the spinning. The next 15 minutes were spent with the doctor explaining the seriousness of this condition, saying how lucky we are that this was diagnosed, because this condition in children Jake's age is usually diagnosed in an autopsy. Then my crazy little guy asked if he would need surgery, and was excited because he thinks scars are chick magnets...
We were sent to the cardiologist the very next day, where again the doctor spent a lot of time with us one on one making sure we understand the limitations of the condition. No running, no baseball, no basketball, any strenuous activity could result in sudden death. Then, I felt like I was hit with a ton of bricks as he handed me a doctor's note to give to Jake's school requiring them to have a defibrillator on hand in case Jake goes into cardiac arrest.  I'll never forget that night, turning on the T.V. to a news report about Wes Leonard, a 16 year old boy dying after scoring the winning basket at his basketball game. That was the slap in the face to say, seriously we are the lucky ones, we were diagnosed before it was too late.  In the next week, the news covered two other children who lives were cut short from the same thing my little boy was diagnosed with.
In the few weeks that have passed, we have been through many ups and downs. Doctor visits, stress tests, echocardiograms for all the kids and the counselor appointments have been keeping us on the go. We have definitely been on an emotional roller coaster ride.  Jake is trying to cope with his sudden physical restrictions. I'm trying not to go insane when he pushes the limits.  We are incredibly blessed that we have an amazing doctor, who genuinely cares. The doctor is recommending a myectomy and an implantable cardioverter defibrillator.  The hospitals around here do not do these procedures, so we will have to travel.  Our doctor is researching which hospital will best meet Jake's needs. So right now it's a waiting game. Our next appointment is in 15 days.


  1. Wow! Y'all just made it to the top of my prayer list! One of my nephews has HCM and we found out when he fell out at a basketball game. Healthy and physically active, he'd never had any symptoms before that episode. We were lucky, in our small Alabama town, everyone comes to the games, including our firemen/rescue squad. They got him stabilized quickly and transported him to UAB, where he was diagnosed. That was over ten years ago.

    The inclusion of AED's, along with proper training in their use, in our schools is really helping save young lives. If you need to have a fund raising drive to help your school get it's AED and fund the training, let me know. I'll definately donate.

    Your Royal Cup sister

  2. Woah... what shocking news! Hope all is going well. You are in my prayers! Yes it is amazing how qickly the rug can be ripped out from under you..... it is then that we learn to appreciate the floor beneath it. You have a strong famiiy & tons of friends.... use them for the support you need.
    Love You Girl!