Friday, February 17, 2012

Dear Diary

Taylor on the train to NYC at Christmas
Dear Diary,
    I think I need to start writing down some stuff.  I will probably want to look back a year from now and check to see if we all made it through.  I hope we do.   Seriously hope.
     Taylor is scheduled to have a full spinal fusion on March 23 at Rush University Hospital with Dr. Vincent Traynelis.   This operation will take 10 hours.  Dr. Traynelis has to first remove the hardware that was put in just last June 27 at Johns Hopkins.   That surgery was not a success---understatement.
     Big hurdle to be able to use Dr. Traynelis:  Get insurance to approve out-of-network costs. 
This mountain is high.  Is it insurmountable?  Today I wish I were the sister of the CEO of United Health Care.   Certainly some doors would open. 
      My stomach stays in a knot.  I mostly stay nauseated (or is that nauseous?).   I can't get words like feeding tube, breathing tube, ICU for five days out of my head.  I am gripped beyond ....beyond.....what?  Beyond what I want to be.
      So, MRI with sedation is scheduled finally.   (Brokering peace between Israel and Palestine would have been an easier task.)  Five minutes ago the hospital called and asked to speak to William Taylor.
I, busying around in my kitchen responded, "Oh, he has Down Syndrome and basically can't talk.  I am his mother and legal guardian.  What's up?"
    Hospital employee:  "Oh, we are not allowed to talk to you---HIPPA laws and all.   We do not show any paperwork here that you are his guardian."
    Me/The mom/Legal Guardian:  "I have the papers here.  I have given them to you many times.  They should be in your file.  Is this in regards to the MRI that we have (finally) scheduled?
     Hospital Employee:  "I am not allowed to tell you." this is just one little bitty example of "There are too many  rivers to cross"...for THIS mama!   Where is my shotgun?  (Kidding!)  No seriously, where is my shotgun?  (Kidding.  Sort of.)
My question for today to myself for my own personal growth---because by G_d, I sure do want to grow through this process.   My question for today:  How do I let go of being in control?
In control of the whole darn control of hospital control of somebody else's healing? 
I know I know I know I know that poster/bumper sticker/coffee mug/tee shirt that says, "Let Go and Let God."   BUT.....where is the step-by-step procedure to be able to do that????
   Hear my prayer O Lord.   Hear all of our prayers. 
 Dear Diary.  I am on a journey that is scary.  I do not know how to navigate my way through this.
 What do road signs really look like when something this big is happening in one's life? 
 These signs--- Make them clear. 
Clearly marked. 
Well lit.
Easy to read.
 In color.
To light my way.
  Love, Taylor's mama