and then the next test....

Our doctor called that evening to explain his frustration with the tech that had completed the first test and that UCLA would be redoing the test for us with solid foods.  I then explained to him that it had already been completed and that the tech had told us that the results were abnormal.  He promised that he would look into the system for the report and call us back as soon as he could find them.  So, we waited...and waited....and waited some more.  Two days later there was no word.  At that point Charlie had become incredibly sick.  It was presumed that she had pneumonia as a result of the bronchospasm from the anesthetic she had with the endoscopy the week beforehand.  From bad to worse, right?  A couple more days had passed and Charlie was on the mend.  It was then Levi's All About Me day at school.  Judson left work and met me for his special day.  As Murphy's Law would have it, right in the middle of our share the phone finally rang.  Of course, in all of this Levi had been the one person who had been getting neglected and the one chance we were getting to devote all of our attention to him was being taken by the phone ringing with the doctor calling with the test results.  We had no choice but to take the call, we had waited DAYS and who knew when we would have the chance to get the doctor on the phone again.

I ran out of the classroom, phone in hand to speak to him.  I had been carrying a pad of paper and a pen with me everywhere I had been those days, and yet in this moment it was no where to be found.  He spouted off some numbers.  I sat in the courtyard of the preschool listening as best I could.  All I caught was that she was suffering from a SEVERE delay.  Only 28% of the stomach contents emptied which was far below what would be considered normal.  Before going further he wanted to send us for a test called an "electrogastrogram."  Essentially and EKG of the stomach.  We called to set up the appointment to find out that there is only one woman in LA that does this test and she was completely booked for a month.  The next test opening was the last day of the school year and yet, we had to take the appointment.  Just so happened that that same afternoon our UCLA connection called to check on us.  I told her just that and within hours she got us an appointment for the beginning of the following week.

The night before the test I received a phone call from the doctors office that insurance approval was still pending.  She advised that they could not go through with the test without approval.  I called the company and got nowhere fast.  They suggested calling when they opened in the morning.  We woke up at 5 am our time and began calling.  We pulled on their heartstrings asking for supervisor after supervisor until finally we got someone on the phone who realized we were talking about a baby.  She then looked at her diagnoses and felt badly for us.  She told us she would rush it up to the board for approval and make sure it was the next case seen.  We should have an answer in an hour.  CALL BACK!  So, I went to my 7:30 meeting at work while Judson worked the phones and planned to meet the two of them at the hospital by 8:30.  He kept calling and still nothing.  Call, after call we got the same answer.  "Sir, it takes 3-15 days for approval for any procedure, even with a stat order. " We insisted that this could not be correct.  What about emergencies, or in this case a procedure that had been scheduled to be done immediately with less than 3 days notice.  There must be someone who can do something.  Still, no one who could help us.

Regardless, we decided to head over to the hospital to wait it out there.  Charlie had been fasting since dinner time the night before and we felt it was better to be there so we could start the moment we got approval.  The hours began to tick by.  Everyone in the waiting area became furious for us.  Elderly people waiting for their colonoscopy, others waiting for loved ones, everyone knew our story.  We made fast friends with the staff and patients while at the same time Charlie was becoming listless.  Soon she was throwing up and the situation was becoming more critical.  We needed to make a decision.  Do we reschedule for another day, wait for insurance, etc.  If we rescheduled we would have to wait a month for an appointment that was late in the day (therefore she would have to fast again for the same length of time...not a good option!)

At that point I went down to the financial planning office to find out how much the procedure cost on the off chance insurance denied us, Judson got on the phone again, the doctors office was calling over and over as was the hospital.  The staff at one point suggested we walk her over to the emergency room and insist they admit her so that they could perform the test that way. All doctors, with the exception of the head of pediatric GI were at a conference in Florida and we were left to make a decision.  We made one last attempt and while on the phone Judson got word that the insurance company not only DENIED the claim but had done so over an hour earlier but had failed to tell any one of the numerous people who had called.  The fury we felt to know that some random person sitting at a desk in an office building made this decision was beyond words!!!!

The staff felt so badly for us they didn't know what to do next.  At this point it was after lunch time and they paged the doctor who came running over immediately.  He told us that he knew exactly who we were, not only from our contact but...YES, her case is that rare and that he had already been in the loop and consulting.  He felt that it was imperative that she have this test and that it be done NOW.  He took us back and told us that they would figure out the money situation later.

They hooked her up to the machine and started right away.  Once the test was started he went over every bit of her medical history.  The best part was that we knew who he was from our friends, and knew that he was supposed to be great.  We had contemplated weeks ago switching to him as our doctor at UCLA and now we got to have his opinion.  He sat with us for a while and went over the test and what it could show.  He told us that no matter who was in town he was the one who interpreted the results and that he would be the one calling us to make a plan.  We felt a bit of relief having had him in the room with us and knowing that he was now part of our "team."

Charlie was a trooper.  She made it through like a champ.  Once the first portion of the test was over and we were able to get some food in her she made a comeback and got her smile back.  We are constantly impressed with how this little girl always looks and acts so normal.  No one would ever know by looking at her that she is sick.  We spent the afternoon waiting by the phone for his call, which came later that day....