The battles we fight

 Before Hudson,  I never could have imagined the hoops and battles parents of sn/sick kids have to face.
It is really mind blowing, and I wonder if society knew what wars we fight on a daily basis with insurance, schools, peers, government, doctor and therapists, etc. maybe people would give us a little more grace.

I know I have said this before BUT I must remind you...
I get NO help from the state of WA. I get no nursing, no medicaid, no SSI, EVERYTHING has been denied.
The only saving grace for us not living under a rock is Children's Financial Assistance, that has saved us from co-pays and deductible on a 6 month basis.

Last week I applied for the 2nd time for medicaid for Hudson. (was denied the 1st time) because I found out in order to apply for skilled nursing Hudson has to have medicaid. The guy I spoke with on the phone from DDD sends me the application via email but fails to tell me Hudson has to apply and have medicaid in order to even fill out the application for nursing. He did tell me, with mostly the tone in his voice, that he didn't think Hudson would qualify for nursing because he is not trached, he can breathe on his own, but would not deny me the opportunity to fill out the application and submit it, although it likely would be a waste of my time!gggrrrrr! Not a pleasant guy!

The kicker however, was this week, when I had to do a 2nd level appeal with my health insurance because they are denying payment to Hudson's Physical Therapist because we hit our max of 20 visits listed in our plan. Hudson goes to clinic on a weekly basis. Our plans have changed through the last 3 years....when all this started we had unlimited PT visits, last year it all changed. I refuse to only give Hudson 20 visits because a plan says so....He doesn't "fit" the plan, he in not a healthy typical child who had an injury and needs some P.T. This therapy is imperative for his health, his well being, his future to avoid future complications with spine, hips, bones, tone, etc. He needs PT at least once a week and I don't think I am asking too much to ask for an exception to be made. Insurance feels differently. Sending in my 1st appeal with doctors letter, PT letter of justification, and my own plea, wasn't enough...we were denied. So, I went to round 2, which was a conference call with the appeals dept. This was one of the most stressful things I had to go through.
When a gal called to confirm with me the day before that the call was still on, I told her about Hudson, and by the end of the conversation I was in tears on the phone. She was kind, and felt bad for me, but it's not her to approve or disapprove, she just sets it all up.
The call was me, Hudson's PT, a doctor brought in by our insurance co, 2 random people who have insurance with this company, and one employee. The voters were the 2 random people and the 1 employee.
It was the worst 15 minutes of the day...my heart was racing, my nerves were shot, and I didn't even know exactly what to say other than what was on my heart. I addressed the medical necessity, the need because of his mito, the fact that we can't house the equipment that Hudson needs that is in clinic, and then his pt chimed in confirming how we are trying to avoid more medical problems on an already medically fragile child. Finally they asked for final comments and that is when I just told them I am a mom trying to do the very best for my very, very sick son. They were asked if anyone had any questions, which no one did.
At the end of the day, I know Hudson is just a file number to these people. They don't know how precious this little life is, what a beautiful, amazing child he is...I am certain if they took one glimpse of my boy, their hearts would melt and the battle would not have to be fought....who could deny him something so simple? I am not asking for something unreasonable.....

I will get my answer by mail. I am praying it is the *right* answer and I will not have to go to the next level whatever that may be...but I will go to war on this one....and I won't stop....

and if the letter says we got the votes needed to win...I am hoping it will pave the way for all the future denials we will be getting, so it will not have to go any further  than a level 1 appeal.

I find it difficult enough to be down this road with a sick child, baring a disease that has no cure, but having to fight these battles feels like salt poured in a gaping wound....it requires more energy, time and frustration that one should ever have to go through....on top of all the other heart-break endured.

As lye in bed that night, I was beating myself up, thinking about what i wished i would have said and wondering if anything I did say have a negative effect. I pretty much over-analyzed the whole 15 minute conversation, thinking how I could have done better, because somehow I am totally responsible for the outcome of this whole thing.

I will take any prayers that the outcome will be favorable and the battle is over...for now anyways!