October 8, 2019

...the insurance battle continues...

We've been fighting with the insurance for a year now.  The doctor's office warned us that getting insurance on board would be a chore and it definitely has been.  We've jumped through their hoops with very slow progress.  In March they granted us what is called a Gap Exception which allows us to see our out-of-network doctor.  They gave us until July 1, 2019 to have the surgery complete but that was an unreasonable timeline (because she needed a surgery in preparation for this surgery & we are missing a document) so we filed for an extension to December 31, 2019, which was eventually granted.  The original plan was that she would have surgery (in LA) in September but clearly that has come and gone without surgery. 

We get asked all of the time where we're at...so, here's the scoop...

We have everything we need to move forward but one single document called a Letter of Agreement.  Without that document we will be "balance billed" for the procedure - meaning whatever the insurance decides not to cover will come out of our pocket.  For example, if the insurance decides they will only pay $5,000 we will be left with any balance above and beyond that, aside from the very large sum of money we will pay upfront - potentially leaving us bankrupt.  So...we wait for said document. 

We've been fighting for this document for many months now.  After a lot of headache we were granted a Case Manager through the insurance company, which made a world of difference.  Lacey has been wonderful to work with and to put up with my almost non-stop phone calls - hey, the squeaky wheel gets the grease.  We talk frequently and have developed a very positive relationship and we are very grateful for her advocating on our behalf.  With the end of the year fast approaching and the surgeon having very limited dates available, I have done my best to keep our case at the top of their pile.  Poor Lacey is just stuck in the middle, but oh man am I grateful for her.

Long story short...for the last several weeks this document has been "pending".  Today we got word that our request has been DENIED.

So what does that mean?!

1.  No, Kambri will not be having surgery before the end of the year.
2.  No, we don't know if or when we will be able to move forward.
3.  Yes, we will need to again file for an extension into next year.
4.  Yes, we will file a member grievance and see where that road takes us.  We're not giving up yet.

We don't know when or how (or even what) the future holds but we're doing our best to hold on, be patient and remember that God has a plan.

Wednesday, June 5, 2019

The updates have been few and far between but the process continues on.  Since our time in Chicago last August, we have been fighting to take the next leap with Dr. Lewin - but let’s back up for a minute first.

Kambri’s journey has been a long one.  We had to fight to get her here - we hoped for many, many months that she would come before she ever did.  Then during my pregnancy we grew concerned because she would “shiver”.  We researched seizures in the womb & talked to our doctor about what could be wrong.  I believe that this was a tender mercy that would prepare us when something was “wrong” with our little girl at birth.  That was 10 years ago just this week and oh, what a journey it has been.  

I don’t know how many hundreds of hours we’ve spent in a hospital, or how many doctors & speech therapists we’ve seen, or how many thousands of miles we’ve traveled or how much money we’ve spent but I do know that it has been A LOT but I also know that we wouldn’t change a thing.  

In 2016 we took a huge leap of faith and attempted to fix her “Nubin”.  We knew the risks going in.  We knew it wouldn’t be perfect but we hoped that it would work.  Time proved that it was unsuccessful.   The year that followed those surgeries proved to be one of the very hardest.  How could we have prayed & felt so good about something, all for not?!  How could we have put our daughter through hell for seemingly nothing?  How could we have spent our life savings, only to need a revision anyway?  I beat myself up.  A few unkind comments from others (about the things I was already trying to work through myself) tore at my heart.  When Kambri questioned why, I had no answers to give.  While I try to make this blog a positive one, it is about the journey and this journey includes some pain & it has never been easy.  That year rocked our world but I’m here to tell you that God has a plan.  

Fast forward...July 2018.  There was a conference in Chicago...we couldn’t decide whether or not to go...we needed to fork out another $4000 for a 4 day trip...would it be worth it?!  I prayed that it would & booked our flights.  We met so many parents & children on this same journey.  I met one mom in particular who had walked an almost identical path.  I shared my feelings of failure with her. She looked me in the eye and said something to the affect of “you did not make any mistakes with Kambri.  You did every ounce of research you could and you made a decision based on the information & knowledge you had at that time.  Now you get to move forward as you gain more information & knowledge but you never failed”.  Her words healed my heart.  

We met a panel of doctors and got new opinions & information.  One of those doctors was Dr. Lewin.  We were drawn to her when we met her, and she to us.  The conference proved to be worth every dime.

We came home and got to work.  They warned us that getting insurance to approve this process would be  a chore.  We’ve jumped through hoops & had an attorney help us get our ducks in a row.  After several months our insurance granted us what is called a Gap Exception.  That was in March - they gave us until July 1st to have the surgeries completed which was an unreasonable timeline so back the drawing board we went.  After more paperwork & phone calls, we were excited when they granted an extension until December 31, 2019 which allows us to move forward! 

One of the doctors we met in Chicago was Dr. Kesser (from Georgia), one of the top Otolaryngologists in the country.  I don’t think that it was by chance that he knows Dr. Shelton, our Otolaryngologist in Salt Lake personally. When we reached out to him (Dr. Kesser) about closing the ear canal, we laughed as they were at a conference together that very weekend, and he confirmed that he had every confidence in Dr. Shelton’s ability, ultimately saving us thousands in travel expenses.  We are so grateful.  We met with Dr. Shelton & his resident doctor yesterday, who just so happens to be heading to do his fellowship with Dr. Kesser.  Small world. 

So here we are....today is the day.  We got up bright and early to head to the University of Utah for yet another surgery.  She’s a champ but that doesn’t mean this ever gets easier.  It’s hard for her.  It’s hard for us.  It’s hard for her brothers.  It’s stretching all of us but we’re grateful for the lessons we’re learning.  

We had to check in at 7:45 this morning.  We’re always grateful for early surgery times because fasting can be half the battle. 

Today’s goal: close the ear canal in preparation for surgery with Dr. Lewin. 

She’s a seasoned champ in the OR.  She talks about anesthesia like it’s old news and knows exactly what requests to make.  


At 9:12 am they wheeled her away.  She got to choose her favorite song to have playing when they went in.  First she chose Chris Ledoux (that a girl!) but then switched last minute to P!nk’s “Walk Me Home”.  I’m grateful for good doctors and nurses who take good care of her! 

Then he and I wait.  Waiting is the worst part.  It was 4 hours this time.  Time seems to crawl in the waiting room. 


We’re always grateful when they take us back to recovery to be with our girl.  She’s usually pretty quiet after surgery and today was no different but she did tell  Jared he had a unibrow and that I look like a purple unicorn.  When Jared told her surgery was successful & that they had attached her big toe to her ear, her little eyes welled up with big alligator tears.  She wasn’t ready for teasing.  

Once she was stable and alert they moved us to recovery & we were able to get out of there pretty quickly.  Today’s recovery was pleasant, that’s not always the case.  




Homeward bound! 

She requested a pit stop at Zupas on our way out.  We’ve trained her well ;). 



So...what comes next?!  In the coming months we will head to LA for a 3D scan of her good ear.  Dr. Lewin will then flop it and create a “mold”.  In September (most likely) we will head to LA for three weeks (if you have any hookups of a great place to stay give me a holler) at which time we will remove the ear we implanted and implant the new ear.  Good things are to come! 

Side note: she got clearance to get her ear wet in April.  It hadn’t been wet since January of 2016.  And now today she is back on a water restriction.  It was fun while it lasted. 😜

The messages flooded in today, thank you friends for thinking of us!  We are so grateful. 💕