Tuesday, January 29, 2013

The following week...

Everytime we thought we had a plan at PCH, Hunter showed us otherwise.  We tried to get him on a medication, Captopril, to help his heart function with the amount of leakage the balloon cath caused.  Everytime he had a dose of the medication, his blood pressure would drop very low (like 35/17 low....yeah...not good).  
Then the plan was to just let him not be on any medication.  He was tolerating it decently, but then his heart started having ST segment elevations.  Basically "pre heart attacks".  awesome....
It was then that they determined he would need surgery.  Ok, not what we wanted to hear, but we could handle it.  So what's the plan?  No one knew
They didn't think he needed surgery in the next couple of days, but they also didn't feel comfortable sending him home to wait for surgery.  We were at a standstill.  They just wanted to observe. 
We met with the surgeon who would have done his surgery.  Talk about sick to my stomach.  I knew it wasn't right.  I knew it couldn't happen there.  Nothing about it felt like a good idea.  

The next day our insurance company called Steve out of the blue.  They knew what was going on and wanted to let us know that our insurance would cover surgery out of state, just wouldn't pay to transfer him.  
Steve talked to our good friend's dad who is an adult cardiologist here in AZ.  He suggested we talk to Dr. Teodori in Tucson for a second opinion.  He is an amazing, humble man who talked to Steve on his way home from work.  He told us he would love to take Hunter's case down in Tucson, but if it was his son that needed this surgery, he would take him to Dr. Vaughn Starnes at Children's Hospital Los Angeles.  That he was the best for the procedure that Hunter needed.

Steve called our insurance company the next morning to see if Dr. Starnes was covered, and sure enough...he was!  Awesome!   We scheduled a consult in LA for the following week.Only problem, we had to get Hunter OUT of PCH in order to get him to LA.










 

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