Levi went in the next day for his MRI and he was a champ! Fortunately, it was normal and we proceeded on with his meds as we had been. About two weeks later I hadn't heard anything about scheduling the hospitalization/testing for Charlie so I called to check in and found out that the orders had not been put through yet. They said it would be done right away and they would get back to us to confirm. I heard from them later a few days later and they told me to expect a date in mid September. Our next appointment for both kids was in mid August. Charlie had been doing well on this new regimen of meds which was promising and Levi was having a few setbacks which meant that we were needing to cut back on his meds and do some clean outs for him. Never a dull moment! We made appointments to return, hoping that the next time Charlie would be in would be for the testing.
On one of my first days back at work from summer we finally got the call. Charlie would be admitted on September 16th. She would be in the hospital for two days prior to the procedure in order to place an NG tube and do a complete clean out. The procedure/test would take place on Thursday the 18th and then we would most likely get to go home on Friday the 19th. Once we knew the dates we started making arrangements (subs for school, a place for Levi to stay, pick up and drop off for Levi, taking the week off, the dogs, etc.) There was so much that went into preparing for that week both mentally and physically. Then the proverbially, "shit hit the fan!"
The Friday before she was supposed to be admitted (the 12th) we got a call from the hospital saying the insurance company had denied the claim through the pre approval process. What was so maddening about this was that the only thing approved was the colonoscopy part of the test, which was simply an "add on." It was not the primary test, nor the main reason we were there. It was used to help guide in the sensors and put them in place but to also look at the anatomy while there was the chance. This was not the test that we really needed! The hospital wanted to let us know what steps they were taking to have the decision reversed. I asked if I should start panicking and they said not to yet, but that if it didn't eventually get approved we would need to cancel. Judson began repeatedly calling the insurance company to fight the decision although ultimately we found out that, of course, we would not have an answer that day and would need to wait until Monday....the day before admission! I was beside myself. I was in tears. We waited months to get to the point where we could get answers and now the insurance company was deciding they just didn't think it was necessary.
So, now we needed to wait for the doctor to make her appeal. They were setting up a peer review to be completed on Monday. A doctor from the insurance company and our doctor would make an appointment to speak with each other so that Charlie's doctor could explain why this test was indeed incredibly necessary. I was still, at this point hopeful but could barely function at the thought of it not working out. I lost it at preschool pick up and could barely get through the weekend.
Monday morning rolled around and Judson began calling the insurance company. They said that if they did not make contact with the doctor that day the case would become "delinquent." The two doctors were stuck in a round of phone tag apparently for days and were left with only a matter of hours to connect. I began quickly calling the doctor's office and was unable to get through. Eventually, they called to inform me that the review was set up for 2:00 and we would be hearing shortly after. To help ease my frustration at this point I asked how often these tests are approved after the peer review process. The lady said that about 95% of the time they end up being approved, however she has seen them ultimately denied and canceled. So, I hung up and we waited!
If you were anywhere near me at around 2:30 on Monday afternoon you know how this call went. The insurance company decided that the test was not only not medically unnecessary but that it was too experimental. They were standing behind their initial denial. The hospital was now informing me that the testing and hospital stay was going to be canceled. I immediately broke down and wanted answers. They told me that as the parent I could file an appeal, which honestly wasn't enough. We had 12 hours at that point. I asked to immediately speak to the doctor, who would call me back. At which point, I hung up the phone and called the insurance company hysterically crying. Once I got someone on the phone I insisted on answers. The doctor beeped in and I had to click over (quite the whirlwind). She explained the call, her frustration, I told her of mine, and asked what this meant going forward. She said that we could keep appealing and hope to be able to do it later down the road. If we were unable to ultimately go through with the test we could make decisions for her care based on the information that we have. That, I am really not ok with, and I am not going to let the insurance company get away with! I asked if anyone had ever paid out of pocket and she said that it had happened once or twice but usually people fight it and appeal and ultimately win, or the other option would be to go through with the test and appeal after the fact.
That got me thinking. How much was this test? Certainly not cheap, but what were we talking? She made a comment about how the other parts were all covered, it was just this test that was denied. So, I asked for the cost. She said she would have the office manager call me immediately and we got off the phone. I then called the insurance company back and "nicely" explained my deep sadness and frustration with what was happening while at the same time getting an explanation of what was covered. Since the colonoscopy was covered so was the anesthetic, operating room, hospital stay, etc. I left work at this point with an extremely puffy face telling them that I would see them the next day. From there I called the office manager to see if a) we could get ourselves rescheduled since everything had already been canceled with the hospital and b) how much money we were talking. The office manager said she would get right back to me. She called back to say that she could not get any answers for me right then, but that she was working on it. She was trying to get us on the schedule and find a price. She was leaving in two minutes for the day but would stay an extra few just in case she heard back from the other departments. If I didn't hear back from her in the next few minutes I wouldn't hear until the next morning...and I didn't hear. So, we proceeded as if everything was off. Until the next morning!
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