On the phone all day…

I was on the phone for a big chunk of the day and I found out that there were a lot of “hiccups”, as one person said.

When we were going to do ACTH a few weeks ago, and then switched to the ketogenic diet, I was told that Z was already approved for ACTH  and that all the docs had to do was call and remove the hold.  Unfortunately, that wasn’t exactly the case. The insurance company had NOT approved the treatment.  Because of the extremely high cost of the treatment, it wasn’t something my case manager or even her boss could just approve.  It had to go to the board, and it had to be studied by their doc to see if there were any other treatments that could be done instead.  But, we’ve tried everything else, and this is the best drug out there for this condition.  So, there was no way for them to tell us to try anything else first.  Thankfully, they did approve it, and thankfully we have already met our out of pocket maximum, because it is crazy expensive.  Like, more than our first house kind of expensive.

They had also tried to get a hold of the neurologist or someone in the office.  But, the only number they had was for the nurse who happens to work part-time right now because she’s studying for her tests.  The insurance company didn’t have any other numbers, and for some reason, they wouldn’t call me.  (That irritates me, because I had other ways to get in contact with the doc.)  But, our case manager wasn’t working on Friday and it had gotten passed on to her boss.

Once the insurance talked to the neurologist, they approved it to go to the pharmacy.  But, then the pharmacy needed to contact the neurologist.  Basically, there was just a lot of paperwork that needed to get filled out and certain critical people were out of the office and it was just a series of “hiccups”.

But, it did get approved!

Then the pharmacy called to arrange a ship time, and they wanted it to arrive on Thursday.  But, our admission got moved to Wednesday.  That’s when I had to bring out momma bear.  I mean, really, were they trying to save the cost of overnight shipping on a medication that was that expensive?  The hospital can’t just necessarily get us in to start treatments like this whenever we want.  But, they had an opening on Wednesday, and I didn’t want to wait another day or two… or four or five till the next week, just to save the pharmacy from overnight shipping.  Ugh, NO.  So, I was getting pretty firm, but remembered the old adage about catching more bees with honey… and I stopped myself and explained how old baby Z is, his condition, and how every day he doesn’t have treatment is another day of regression.  Then the pharmacy guy quickly approved overnight shipping so we could have the meds on Tuesday, and still make our Wednesday admission.  Phew!

 

Bills… Bills… Bills…

Well, we’ve started getting all the bills now.  The first hospital stay at Texas Children’s was over $20k.    Needless to say, we’re so far past the point of meeting the deductible that now we’re past the out of pocket maximum.  So, from now, for the rest of the year, everything is “free”.  Ha.  Free.  That is, once we actually get it all paid.  Not that I’m complaining.  Really.  I’d do anything for my little guy.  But, it’s just something we hadn’t prepared for, and it’s just one more thing to stress about.

My husband’s company is getting purchase officially later this month.  We just changed insurance this past January and I feel like I just got the hang of all the changes, and now it will be changing again.   They tell us that the new insurance will honor the deductibles we’ve met this year till year end.  We’ll see.  It makes me nervous.  I mean, I know we’ll start over again in January, but I’m really hoping we don’t start over in September and also again in January.  Crossing fingers!