New Trach!!!!

Besides Keyan needing emergency surgery over the weekend because her central line fell out, (Never a dull moment around here!), I have spent the last two weeks doing not much else besides fighting for the trachs that Keyan needs.  It has been literally hundreds of phone calls, emails, voicemails, letters, and even more tears and vents of frustration.  It comes down to the dollar amount that the insurance company will reimburse the medical equipment company.  It is very complex and confusing because it basically makes no logistic sense.  

After my last blog post, several of you very generously offered to help buy Keyan her trach.  That was never my intent when sharing our dilemma but none the less, it was so comforting to hear from so many people who love our girl and are willing to help her.  The support we get from all of you means so much to us. 

To make a long story short, while we proceeded with ordering the custom trach (which is not the ideal one, but is the one that we can get covered), I had a lot of conversations with the manufacturer of the new trach and even the product developer.  Yesterday, I received a call from them and they told me they were sending the trach that Keyan needs to us as a "sample", with no cost to us!  I could not believe my ears.  This is a small company just working at getting off the ground.  I never expected them to do this.  The woman said, "We do not want this to be a hurdle for you right now.  We know that caring for kids like Keyan is hard enough.  Yes, we are a company that needs to make profits, but we also do not want kids to go with out what they need."  WOW!!!!  What an impact they have made not only on Keyan but on me.  We feel so blessed by their generosity.  They overnighted them and we received them this afternoon.  I seriously felt like it was Christmas when UPS arrived.

We are ultimatly upsizing Keyan from a 3.0 diameter to a 4.0.  That is no easy task though so we started tonight with a 3.5.  It was difficult to get in, but we eventually got it.  She coughed for quite awhile and said that it felt "different...even when I breath." It didn't take long though before she was going on with her night like nothing ever happened.  She has been anxiously awaiting a longer trach because the shorter one is causing so many problems. She was excited to try it out...which is a good thing because her excitement overcame the pain and fears.

The two trachs that this company sent will only buy us time. So for now, I will continue fighting for this crazy piece of plastic that gives Keyan a better quality of life.   They sent the one that she needs, and a smaller back up one.  She will continue to need two of the correct size every month.  But, I will not have to fight watching her continue to suffer.  She will be breathing easier and hopefully no longer bleeding from the irritation of a short trach.  She can go on being her happy little self while I try to plead to the powers that be!  Please continue to pray that the medical equipment company will see the absurdity of paying thousands of dollars for a custom trach when the ones that we want are less than $200.  While it makes no sense....it is the system we are stuck in.  When Keyan's ENT listened to the problems we were having and tried to catch up on all of Keyan's recent medical history, he looked at me and said, "You need a problem that can be answered, and I can give you that!"  It was awesome to feel like he understood the complexities of Keyan and was honestly happy that he could take some of the burden off my shoulders...little did he know that he was creating a battle!  However, I will always go to the ends of the earth to make Keyan's day the best one possible. Today, with a lot of help from the good Lord above,  and some people who genuinely care about kids,we managed to do just that!

Checking her new trach out in the mirror...look at that smile!