For me, it has never been so much the caring of my children's medical needs that gets to me. It's the dealing with insurance. We've always had one battle or another with insurance....from one year covering a topical medication to the next year saying that it can't be covered for a child that young. Or out right denying coverage for a pill (Singulair even after it became a generic) until it is proven the child has been receiving treatment via allergy medication and nose spray from a specified list of acceptable medications in those categories. Mind you if the insurance really did their homework prior to such a letter, they would see they've been covering the required medications to get the approval for years. Or how about a known gastro problem for a couple of years and then being denied medication for reflux when a medication used to be covered. But no, each case means getting the physician to help with the fight by writing a letter. I can't help but think each and every time....obviously my child's doctor knows what he or she is doing and they have a reason for the prescription in the first place. They shouldn't have to take even more time to right letters explaining their actions to insurance companies.
That brings us to now. Going into our new phase in life with Bradley, we knew we would be up against denial from private insurance. But sometimes, the phone calls of each new thing being denied can get frustrating. Today was one of those days. We knew from the start that his elemental formula for which 100% of his required nutritional intake comes would not be covered, hence the need to start trying to get Medicaid via a disability route. Well, little did I know or prepare for the other denials.
Prior to leaving the hospital, I was contacted by the company that would be delivering his medical supplies once a month. The initial contact was to let us know that insurance denied covering his formula (by the way it is about $370 for a case of 6 cans that will last us about a week), but that insurance would cover the gauze, feeding tube connections, syringes, and of course the "button" replacements. We received most of these items, but had yet to see the syringes that we have to use to deliver the formula through his tube. Today, I found out why: Insurance denied coverage. Why? Because the prescription for his formula said he could take it by mouth or via his tube. Trust me, if he could live off of taking this stuff by mouth, we wouldn't have put him through surgery for the tube.
So I got Mark to explain the situation to the doctor and have them fax a new script to read the feedings were to be only through the tube. Well, that most likely won't work either, but we will wait and see. Why won't the new script work....because now it has nothing to do with the script. The script is now written perfectly, but the clinical notes through the years and currently on Bradley make it clear that he can still eat and drink using his mouth. Since he can still use his mouth without complications such as aspiration, insurance will not cover the syringes to deliver his formula. Yes, you are reading correctly. They approved the surgery, cover the "buttons" (ports), and cover the connecting tube into the button, but not the final pieces required to actually deliver his formula. Yes you infer just what I do, an insurance company would rather a person have a much more serious health issue that I'm sure costs even more to deal with in order to cover things before they want a person who has only a few complications to benefit. You see Bradley can eat food, but his body sees it as a foreign invader. Food hurts his body. In order to allow his body to heal and try to reintroduce foods, we need to go this route, but from an insurance stance they would rather he not be able to eat food at all through normal means.
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| One of the Mini-One Button Kits. The tubes with the purple ends connect to his button and the larger syringe goes in to deliver his formula. The tubes themselves are replaced a few times a month, but the large syringe is "supposed" to be replaced daily so we were supposed to get a month supply of those wrapped individually. |
There are many times I just want to know what kind of supposed "doctors" or even "nurse practitioners" or "other health care professionals" really are consulted and work for insurance agencies as the letters that will come will surely use in their excuse for denial. I want to meet them personally, have them live my child's life for just a month.
Unfortunately for Bradley, he has what is considered a rare disease. So unlike so many other more common diseases where insurance probably covers things more readily, we have to face a battle each time. Instead of just getting to love and care for Bradley's health needs, we have to spend time dealing the fight just so he can eat. Afterall if you do just the math on his formula alone you can easily see that cost alone for a month can be taxing on the family budget not to include all the doctor visits, medications, and medical supplies. The great thing is knowing that we are not alone in this and there are people and organizations out there to help us along this road. The tough part is knowing that the road ahead is potentially long and what may be approved and covered this year, may or may not continue to be covered depending on any new policies that may come in to play.
So I was thankful that I forgot the milk. I got to get away for just a few moments so I could breathe after the last phone call with denials came at about 5:00. I got to open my mind up so that God could remind me that we are in this together. I just need to keep trusting in him. So I walked the aisles with songs randomly popping in my head to remind me of God's grace and to trust in His timing. To let Him be the focus because I truly believe He has a plan. Bradley is an amazing little boy and I have learned so much from him about faith and about living life. Until word spread about his needing a feeding tube, many people at work would stop me and say to look at him and watch his attitude about life you would never know the battles he faces.
By the time I got back home, I had time to just relax and snuggle with my babies. Then after I got them tucked in to bed, as if God knew I needed to hear his voice once more I received a Facebook message with an offer that I am honored to receive and that I get to spend time in prayer over for the next few days. As I said, God has his plans and God has his timing for things.
So I will drift off to sleep with some songs in my head as I lean into God's arms....
While I do have 2 Cinderellas I get to dance with often, my first is Prince Charming....Bradley is the one who I spent many nights dancing with before the girls came along so....."He spins and he sways to whatever song plays without a care in the world, And I'm sitting here with the weight of the world on my shoulder....."
"Cause I'll be by your side, whenever you fall, in the dead of night, whenever you call. And please don't fight these hands that are holding you. My hands are holding you."
"I am, holding on to you, I am, holding on to you, In the middle of the storm, I am holding on, I am...."
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