Right before the rug was pulled out from beneath us!

Wednesday, April 13, 2011

Surgery next week!

Sucker punched.  That's how I feel...  I knew the fight was coming, but today I got sucker punched...I thought we had a little more time.  My appointment with Lisa from Hypertrophic Cardiomyopathy Association was at 4 o'clock.  I had already faxed her Jake's test results. She took all the history and information, then I was explaining to her that because the cardiologist had said Jake was severe, I have stopped him from doing pretty much everything. However, this week we have just started going for about a 1/2 mile walk because I was concerned about his sudden weight gain. She told me not to be too concerned when a doctor uses the term severe. She said she'd let me know when she looked at this results...That's when it came... the feeling as if someone had punched me right in the gut...   "SHIT".... then " yeah, he classifies as severe."  or was it HOLY SHIT!  At this point I'm not quite sure anymore...  After she looked at his test results she said  I would not be continuing those walks with Jake. He is at severe risk for SUDDEN DEATH. He needs a ICD (implantable cardioverter defibrillator)now. At 4:35,  She emailed a doctor she highly recommends while I was on still on the phone with her and CC'd it to me....  seriously I copied and pasted two lines from it...
"He needs to be seen asap… and we need to get the ICD in asap.. hopefully on the same visit. 
HELP….  Can you please call mom to get her in at the next available slot!
It was 4:46 p.m. when I hung up the phone with Lisa. I took a chance and called the doctor's office she was recommending. They took my info, and said the lady who schedules everything had stepped out but she would get with me when she came in... Because it was so late, I thought I wouldn't hear anything until tomorrow. At 5:03, I received a call from Murdena, letting me know that it will probably be next week, she would call me in the morning to confirm the exact date as everyone had already left. At 5:04, I received an email from the receptionist with  Hotel information and At 5:13. I received an email from the doctor.  It looks like we are going to Tuft Medical Center in  Boston, next week. I posted the times because it happened so fast. I'm still a little shocked.   If you look at Jake he looks like a healthy kid... 
SO how is my kid handling it... He is excited to be going on an airplane. Also the crazy boy is working on impersonating Chinese voices from movies he has seen because Lisa said he needs to be in China Doll Mode...  sitting on a shelf looking pretty but doing nothing... The only question he asked was.. "Will they have to put me on bypass to do this?"
So tonight... I will find him the answer... 


  1. Wow! Isn't God amazing! I know it's a shock that it's happening so fast, but the good thing is that it's happening so fast! Definately praying for you.

    May I share this with other prayer warriors here at Royal Cup?

    Your Royal Cup sister
    JOY W

  2. It seems like ... I blinked twice and the whole world changed! ((((Jake)))) He is such a trooper. He gets that from his momma. YOU and Bill are such strong, loving parents. You know that I will be there with you in spirit and in prayer, and here for you all, always.