Right before the rug was pulled out from beneath us!

Thursday, May 26, 2011

Playing the waiting game?

A large number of people diagnosed with HCM,  are diagnosed with depression before they are diagnosed with HCM.  Jake has been battling depression, he has his good days and his bad days.  Saturday was a bad day.  He was in a mood... and repeatedly swung his arms over his head. Because of the placement of the lead wire in the ICD,  this is frowned upon.  He could pull the lead wire out, and repetitive movement could wear the wire out.
I honestly feel defeated sometimes, everything we are doing to take a few steps forward, and in a minute of a fit of depression,  he could of destroyed it.  
  On Monday, Jake came home early from school because he was having chest pains.  The doctor did an EKG and sent us for x-rays to make sure the lead wire was still intact.  I stressed my aggravation to the doctor, "why can't they just do the myectomy" I mean seriously, they said they usually do a myectomy when someones septum is as large as Jake's but because he is showing no symptoms they want to wait... seriously why? Our doctor  explained  that  right now Jake is living a normal life. Yeah he is limited to no strenuous activities, and he is tired all the time. BUT.... A myectomy is a serious surgery, there can be complications, he could have a stroke while on the table.  So ok. now I get it... I am still frustrated. I truly don't believe that is the "plan" in store for Jake. But I will wait patiently and not push the issue until Jake shows more symptoms.  I sit and wait .... waiting for my son to get worse.  They call it the waiting game...  all I can say is THIS GAME SUCKS!
    Jacob came home after school on Wednesday and took a nap. He slept until 7p.m. Woke up ate dinner and went back to bed about 9:30. 

1 comment:

  1. All of this is so hard on all of you, and it all happened so, so fast. He'll come around. :)
    I hope you are all doing well. ♥