The current fight

$194.25....This is what stands between Keyan getting the new trach that she needs right away and waiting 2-3 weeks for one to be made.  $5.75 shy of $200...means my daughter can't breath as efficiently as possible for another 2-3 weeks.  $194.25...what is keeping me awake at night and dominating my thoughts during the day.  

Let me explain.  Keyan has outgrown her current trach.  We saw the ENT at the end of March to address it and he measured her as needing a trach that is 15mm longer than the one she currently wears.  He than explained that he was going to try and order one from a company that makes that size  as a standard size but that it was a newer company on the market so he may not be able to get it.  If not, he would have to order one from the company that we have used for the last nine years, but they would have to custom make it.  "Custom made" were words I dreaded hearing.  We have been down this road before and it was horrible.  Keyan needs two new trachs each month to keep the risk of infection down.  That is the bare minimum.  Because we now have to have a custom trach made instead of a stock trach, the price of that trach skyrockets, and her insurance will only cover 1 trach every 6 months!!!  That is completely unacceptable.  Oh, don't worry...we will fight it, we will have doctors write letters of medical necessity, and we will do everything in our power to get two a month but we will have to do this EVERY month and will still not have any guarantee that we can get Keyan what she needs.  

So, we began the process right away and we went after the trach from the new company.  Finally, eleven days later, I was able to get some answers as to where the process stood.  Our medical equipment company informed me that "they had done everything they could" and were not going to be able to get the trach that the doctor had ordered, so they needed to get the information to custom order from the original company.  I immediately asked a lot of questions, talked to several people and eventually had to give in to the fact that I was at a dead end with this company.  Fine...I will track down this new company and go from there.  I did just that and discovered that they have dealt with another medical equipment company here in Michigan.  So, I called that company to see if they could order the trachs for us...and despite three phone calls, I have yet to get an answer.  Meanwhile, my daughter is waiting and needing a longer trach.

This morning after some other calls, I called the manufacturer of this new trach and actually got to talk to the product developer.  The purpose of my call was to ask how much the trach would be if I private paid.  That is where the $194.25 comes in.  That is how much this little piece of PVU costs for me to buy.  This piece of life saving "plastic", this artificial airway that allows Keyan to breath easier and clear her secretions.  Do you have any idea how maddening it is that this trach sits on a shelf two states away waiting to be overnight shipped and I can't get it?  Instead, the process that we have to follow is that we have to order one to be custom made and wait 2-3 more weeks to get it.  In the interim, Keyan is not only more fatigued, but she is so frustrated.  She doesn't have the freedom of movement that she should have because if she moves to much, her trach pops out.  When she talks, she often holds the trach so that it stays in.  She is so frustrated to have to keep dealing with a trach that keeps coming out.  It doesn't feel good in her body and it isn't doing its job.  

Not only that, but the product developer and I talked and he was telling me that one of the main things they were going after in developing this new trach was to eliminate the cancer causing agent BEHP out of their products....great!!!  I know that having all of these medical devices comes with a lots of unknown risks, but I hate having it confirmed. In the end, what I have learned is that there is a trach that is not only the perfect size, but also safer for her...and we are trying to climb mountains to get it.  Does that even make sense? UGH!!!

I am not giving up, you all know me too well to even think that.  I am also not writing this to gather sympathy.  I am simply sharing this to make people aware of the insanity of it all.  You have heard me say before that Keyan takes a whole person to manage her and keep giving her the best day that she can have every day.  Between appointments, prescriptions, insurances, supplies with three different companies, nursing staff, and fighting the constant fires that are always burning, there is always too long of a to-do list.  This is just one example of the hurdles that are in front of us.  Not only is it exhausting, maddening, and so frustrating, but is breaks my heart to watch Keyan struggle with a substandard piece of equipment when there is a solution.  Anyhow, I am off to keep climbing...in between giving these kiddos a great spring break day!  Please join me in praying for a rapid solution!!!

We sure do love this girl, and no matter how exhausted, we will keep fighting!!