Bai’s back has been a source of a lot of strife in our family for the last few years. It has brought us to our knees on more than one occasion. It has nearly broken my spirit. Her back has put us on house arrest. It has cost a mint. It has been through more surgeries than I’d care to remember or count. Here I sit, again, prepping to go and “deal” with her back tomorrow.
As many of you know, last year Bai got her 3rd set of spinal rods placed after 2 sets succumb to infection. We have watched her so close to death, infection ravaging her body. We have seen metal come through her skin. We have removed, replaced, removed replaced, like crazies to get her straight and fix a number of other issues that come with scoliosis; always weighing the positives and negatives.
Last year we were promised perfection. We were told the rods would be one with her, tucked in her muscle, skin professionally positioned around them by a plastic surgeon. This time infection would not ravage her body. This time metal would not poke out. This time – magic. Fibs. Lies. False.
This time we would have rods that stick out running down both sides of her spine. Now we have to watch every chair, every bed, every place she lays or sits so the rods touch nothing, if they do – bed sores. This time we have compromised quality of life.
We demanded a solution. The solution was collagen. Collagen was to be pumped in around the rods to create a cushion barrier around the rods to keep them in place and give Bailynn a little more freedom in positioning. We had it done last May, June, July and October (2017). Each time improvements could not be denied. Each time Bai’s rods looked less like stegosaurus bones. Unfortunately it takes a few times for this collagen to really build up and it has be be repeated. It is a special collagen designed to rebuild and shape facial features and more for people with HIV, it is a poly-L-lactic-acid-based injectable dermal filler. It has never been used like it was being used for Bailynn.
We scheduled another injection for July the 28th of this year. Bai’s rods increasingly showing more predominance. Our insurance denied this procedure. No lie. She has had it done 4 times and now they say – NOPE. DENIED. So or course we appeal. Do a doctor to doctor, peer to peer with our insurance, after I called them and explained why Bai was having this done. Anthem Blue Cross Blue Shield by the way. DEAR ANTHEM, Why? Help? She is a little girl and she needs this!
Even after the appeal Bai was denied this procedure. Our insurance would rather pay for the consequences of the rods coming through her back than for the collagen its self. Stupid. Why do preventative procedures????? So silly right?! Insert eye rolls here. I have been beside myself. What the heck. Why would they let her have it done 4 times and now say no? Now it is experimental! Why now are they saying it is experimental? Why now? Well, it is not cheap. Over 60K just for the collagen, not the OR, not the Doctor. That is insane.
Then, why are the doctors not fighting for this? Why are they so blasé? Why am I on the phone explaining why she has this done!!! They broke their promise! They put them in bad! AHHHHHH!! Come on people why are we not a team?!
Bob and I travel to Indy tomorrow with the girls to face the 2 men who did this to Bai. We need answers. We need ideas. We NEED collagen. Riley is a learning hospital. Teaching. Top in its class. Riley is innovative and experimental. Raises tons of money to HELP CHILDREN! Here is one free subject – Bailynn Hammonds. Please experiment with collagen on her. Take notes, use the research. Maybe someone else needs this too. Maybe there is another too-skinny child in the world that some doctor put hardware in their back cruddy??? Can’t just be Bai right!?
I am so tired of this fight. So I beg you to pray with us. Tomorrow at 2 (local time) we meet with these guys and we can’t leave that room till quality of life is restored and REMOVING THE RODS is NOT A CHOICE! She has no zipper to keep this up. She can’t keep enduring the wrath of doctor’s mistakes. They also can’t just say she is skinny, for the love of our Lord above, this is not a new development – she is and always will be SKINNY, get over it!!!
In the meantime I have been trying to figure out what we would have to pay if we opted to eat it and do it out of pocket, hahahahaha. I need a winning lottery ticket. Anyone got one?
I need Anthem and Riley to understand what this means to Bai. How can you scream when your voice is being strangled?