Medial Frustration and Life in Transition

For the past 6 months I have fought with my insurance company to get a medical authorization to get Joseph a fresh muscle biopsy done to test for mitochondrial disease.  Once I FINALLY got the medical insurance to approve the biopsy I have spent the last month trying to get the doctor's office to call me to set up an appointment.  In the last month I have called them AT LEAST 10 times and I have gotten only 3 calls back.  Today was the FIRST time someone called me AND I was able to get the phone.  Keep in mind I have left two messages a day for the last three days.  I even called the insurance case manager to complain that my calls were not being returned.

When I got to speak from someone in the neurology department at UCLA I was told they did not have my son's records.  YOU'VE GOT TO BE FREAKING KIDDING ME!!!  So the guys goes on the explain I need to talk to the registration department.  I said, "why was that not in the message so I could check up on things instead of losing time?"  His response, "I don't know but I could put in a request to get the message changed to add that information."  UGH!!!  SHOOT ME!!!

So if you do not have a patient ID with the UCLA then do yourself a favor and contact the registration department (phone - 800-825-2631, fax - 310-301-5391) since they are in charge of everything anyways.  So I had to called Joseph's referring doctor again, the geneticist, and asking her office to fax over the information again.  A week ago she had faxed it over while I was on the phone and now here I was asking her to fax over the information again.  I explained how I had been trying to make this appointment for the last month and I was getting frustrated over the bureaucracy of the UCLA system.  The nurse at the geneticist's office was kind and she said she would fax it over and then call to make sure UCLA registration had what they needed.  I told her that was VERY nice and THANK YOU!

I was able to make a few calls to Arizona today.  I was able to talk to an advocacy group for disabled children.  I was able to get some good information and I am sure I will get some more.  I found out about a great homeless shelter program called UMOM.  I may have to take advantage of one of their programs until I can get my first paycheck from my new job.  Otherwise I will only have $1700 to $2100 to support all of us for the month.  Plus, once I start my job I will not get any pay right away.  The first paycheck will be at least two weeks after I start and I have to find someone to watch the children for me and I will have to pay them in advance (at least partially).  Just need to determine how I am going to pay to for everything.  By taking advantage of one of UMOM's programs for a bit it will help me to get us on our feet.

On a possible positive note I remembered that Good Night Pediatrics is located out of Phoenix.  Yea!!!  I cannot recommend the office in Henderson, NV enough.  They are GREAT and MUCH faster than an emergency room.  With the office hours from 5pm to 5am I can take care of emergencies during the night with ease.  That is a HUGE relief to me since Joseph has a TERRIBLE tendency to have some sort of respiratory emergency on the weekend or during the night.

I have a lot of friends on Facebook and they are some super great people with super great information that I like to share on my blog.  One post was taking about Gluten Sensitivity and Magnesium Deficiency by Dr. Osborne.  It is a great article explaining how this can occur.   Someone also found an idea off of Pinterest that is a great idea to get yogurt into children.  You can make your own yogurt dots.