The Fight

After the prescription for the cranial band was written, I called Cigna to make sure that the equipment would be covered under our plan. Cigna has been overall fantastic during this entire process. They didn't blink at paying for a twin birth, never once questioned paying for Nicholas's NICU stay or surgeries. They set us up with a nurse case manager who was there to stand in and help us with any hospital procedures that we had. He can interpret what we're being told by hospital staff or pediatricians. He helps answer any questions we have. He is a liason between us and Cigna. After every hospital stay, we can expect a call from Ray.

When I called Cigna, the customer service rep informed me that she would contact the prescribing physician and determine the procedure and diagnosis codes to make sure we were covered. Since I called her at 5:30 p.m., she told me she would call when she got in the next day and call me back around 1 p.m. She called at 2 the next day with good news that the procedure and diagnosis codes made the equipment medically necessary and directed me where to go that was in network. We made the appointment I blogged about previously and started the process. The prosthetics company made the authorization request and we were told it could take up to 30 days. Ray happened to call us and told us he would try and expidite the process so Nicholas could get started on his treatment ASAP.

About 2 weeks went by and we received a call from the prosthetics company. Our authorization was denied. The reason was that the procedure code for the band was excluded from Mike's company's plan. They had a loophole - if Nicholas had skull reconstruction surgery they would cover it as a recovery item. This made little sense to us - we could potentially fix his issue with a $1500 piece of equipment when he was young enough that he wouldn't even remember it. Or...we could wait until he was over 2, continuing to hold up his development as he's having a hard time rolling over and holding his head up because the weight is not evenly distributed, have a traumatic and expensive surgery and THEN use the $1500 piece of equipment?

We went into fight mode. The first thing that happened was that we escalated the request to the "mis-quote department." Since we were originally told the equipment was covered, there was a possibility that they would cover it because they told us incorrect information. That would take 10-15 business days to be reviewed. While that was happening, we were requesting letters from all of Nicholas's providers - his neurosurgeon, pediatrician, speech therapist, occupational therapist, and physical therapist. Mike researched and found several journal articles published in scholarly journals proving that cranial band therapy is not only effective but among the best treatment for plagiocephaly. Mike also called his corporate HR office and sought their help. They began their research and promised to get back to us. I began work on a letter and we prepared to use their surgery loophole against them since Nicholas had already had brain surgery and this was actually partially the cause that created the need for the band. We commissioned Ray to go to the medical director at Cigna again to pressure an in house appeal.

Insurance in this country is fundamentally broken. I have seen it in my career - watching physicians have to scramble to prove their prescription is medically necessary to payers such as Medicare and Medicaid. I have experienced it now in my own life, having to fight to get a medically necessary procedure to help my son. It is a sad commentary on insurance coverage when a physician prescribes something and the insurance company gets to decide whether it is medically necessary for the patient. I agree completely that insurance should not have to cover something that is a convenience item or if the patient chooses to upgrade an item, but if a physician deems something medically necessary, that should be the only requirement. Insurance must be fixed. I'm not commenting on if I feel the ACA addresses this or not, because this isn't about a political debate here, but insurance needs an overhaul. It's not good for patients. And I say that with a typically amazing insurance in my pocket.

With all these irons in the fire, we were preparing to send in our appeal, which would go to a third party impartial physician. We were certain that the appeal would be granted or we would fight harder. The prosthetic company was amazing and told us that should the insurance company fail to cover the equipment, they would provide it to us at the price they would charge Cigna and that we could make payments. We kept this in the back of our mind in the event that Cigna was going to take too long and we would need to pay up front and seek reimbursement. Last Friday Mike got a call from his HR representative. His amazing company agreed with us and planned on contacting Cigna and telling them to move forward with authorization for the cranial band. She said she assumed we should receive a call within the next business day. Meanwhile, Cigna had taken a look at the policy they were denying the authorization on and discovered that no such policy existed in the plan Mike's company paid for. Under the original policy that we (and the original agent I had spoken with) had researched, Nicholas qualified and Cigna should pay. The prosthetics company called with an approved authorization and congratulations and Nicholas was scheduled for his fitting. Mid-July he will have his fitting and hopefully have the band soon after. 

Hydrocephalus Association WALK

Hydrocephalus is not a well known condition. Unless you've met someone who was willing to talk about it or you know someone who has been diagnosed with it, the likelihood that you're aware of it is slim. Certainly Mike and I along with our families (with the exception of my nurse sister) had not heard of it until halfway through my pregnancy when Nicholas was diagnosed. 

After he was officially diagnosed, the first thing I did was try to reach out to a community. A group that knew what this was, what the prognosis could be, people who had walked in these shoes before. I was disappointed to find that there wasn't really a community local to central Florida. I found groups on Facebook that have been helpful, albeit faceless. I wanted a support group, to look someone in the face and see my potential future. To hear the best and the worst of this world I was now facing. We have had tremendous support from our families and friends. We have prayers from around the globe. When Nicholas winds up in the hospital we get messages and texts and phone calls and offers of help. And each and every one of those is felt and appreciated and held close to our hearts. It would be helpful to also have a place to sit down with other parents or people with hydrocephalus and say what we see and hear what's worked for others. To have someone know that while in most babies crankiness and refusal to eat probably indicates something benign like teething or maybe an ear infection, your heart is terrified that in your hydro baby it means a shunt failure and your child may be in brain surgery tomorrow. 

In my research I ended up finding the Hydrocephalus Association. I devoured their educational material. I read each and every success story. I sobbed watching the video about the woman who has had 20 revisions in her 25 years of life (that's 20 brain surgeries!) and whose fiancé stood right by her side as she underwent each of them. And I learned about the Hydrocephalus Association WALK. I became excited because what better place to meet the hydrocephalus community than at a walk! I searched several times and didn't find a walk scheduled in central Florida. I ended up sending an email to the address listed on the page asking when (or if) a walk would be scheduled in central Florida. A few days went by and I finally received a response that a WALK hadn't yet been started here but if I were interested in volunteering to start and chair one they would love to talk to me.

At first I laughed. Me. A full time job, a pre-schooler, and twin babies, one of whom has medical complexities. But the more I thought about it, the more I thought why not me? Often a change starts with a single voice or a single step. This is a major metropolitan area and happens to have one of the best neurosurgeons in the nation. He does over 200 shunt placements a year. Clearly there is a community here of hydrocephalus warriors, why couldn't I be the first person to take a step towards uniting us? 

When the event chair from HA called me, I listened to her closely. She explained that of the 35 WALKs nationwide, 100% of them are completely volunteer driven. The WALKs bring in approximately 50% of the Association's annual revenue which goes towards funding research for better and more effective treatments and hopefully eventually a cure. The HA provides training and helps you along the way, but the volunteers bring the walk to life and keep it running. The HA has long wanted to bring a WALK to our area but since it's volunteer driven they needed someone to commit to bringing it in and they haven't had that yet. She told me that if I was interested in getting more information after our conversation she would email me a more detailed description of everything the chair would require. She warned me it would likely be overwhelming and it was designed to come across that way because, though it was very doable, it was a commitment and they wanted us to know that. I agreed to receive the information and look it over. As I read it, rather than become overwhelmed, I felt empowered in the face of a condition that has left Mike and I feeling powerless at times. If I could help just take that first step towards getting this going, I could be part of a force that may eventually make it so no other parent had to deal with this, or no other child had to watch a parent develop this. 

Beyond just that, what a fantastic way to help bring together the hydrocephalus community! Perhaps there could be support groups offered, help with understanding hospital bills, a volunteer translator who goes along to doctor appointments and makes sure the parents or patients understand. The possibilities are endless. 

We have met several people who have hydrocephalus or are parents of children who have hydrocephalus since Nicholas was born. These are all people yearning to meet others in our shoes. 

Provided everything goes smoothly, the HA is shooting for a fall 2016 WALK in central Florida. Keep an eye out for updates!

Noggin Update and a Special Brother

Nicholas had his appointment with the orthotics company that will be making his cranial band yesterday. It was more of an introductory appointment in order for them to determine just how great his need was and also to gather all of the information they will need to get the pre-authorization from our insurance company. Mike said it was a lot of measuring and pictures and a questionnaire for parents to fill out. One of the questions that the parents were asked to answer was on a scale of zero to five how great do you believe the severity of deformity does your child have - where zero is no deformity at all and five is the most severe. Mike answered four to that question. After he was done measuring and taking pictures, Mike asked the expert what he would have answered on that question for Nicholas. The answer was that Nicholas was definitely a five. And that he was the worst head deformity the expert had ever seen. For someone in the business and who makes cranial bands all the time that was a slightly disheartening piece of knowledge. 

The good news is that we don't know just how successful this will be. We were told the band should be able to help with the flatness in the back of his head but they aren't sure how successful it will be in removing the cone shape at the back. Hope for the best and prepare for the worst seems to be the motto we live with Nicholas and he honestly has surprised us most of the time by landing on the better side of the equation so we will just step back right now and hope that this helps him. 

They have also asked us to cut his hair since he has so much of it. I'm a little sad that his first haircut will be at 6 months old but if that's what he needs to be better then that's something I'm willing to do. 

I recently took Zach out to a fun place to play since he doesn't always get to have so much fun between therapy and doctor appointments, hospital stays, and other things that revolve around having a child with high medical needs. When we got there, he was the only child (besides his siblings) there to play. About 20 minutes in, another child and his mother came in. I was playing with the twins in the baby area and Zach immediately approached the other child to play. They engaged in games and both had no problem running with the other's imagination. They were dinosaurs, and race car drivers, and train engineers, and running from snakes. After they had been playing for awhile the other child's mother approached me and asked if Zach had other friends or someone in his life with autism. I answered that he did not (to my knowledge). She looked shocked. She said he's so good with my son. She told me that Zach was the first child he had actually played with. She explained that he usually played next to other children but she had never seen him engage with another child the way he was doing with Zach. I'm not sure if he's just more sensitive, if he is meant to work with special needs children, or if maybe he just clicked with this child but Zach seems to have an ability to see beyond a "disability" and just see the person. Again I hope that's a kindness and a skill that he carries far into adulthood. 

 

Under Construction

Nicholas has had a lot of focus on his head his whole life. The reason is obvious, he has a condition that requires a little more maintenance than the average noggin. As his ventricles have been draining since the shunt was placed his second day of life, we have watched his head begin to take a concerning shape. While the size has reduced drastically, he has taken on a cone shape. 

The first time we discussed the shape with the neurosurgeon, it was determined that his back ventricles still had extra fluid and his brain was growing so there was nowhere for the fluid to go but push out against the back of the skull. This began the frustrating Easter hospital visit when the shunt was turned down drastically and Nicholas had a poor reaction. 

Nicholas's pediatrician and his therapists had all mentioned to us recently that they thought it was time to start considering helmet therapy. His therapists have mentioned that they believe that he is having trouble holding his head up in part due to the shape of his head since it is off balance. Certainly the size has a lot to do with it as well, but they feel that it doesn't help to have it be so misshapen. He is also having difficulty rolling over, though he's trying very hard, again due to the cone shape. 

Last week after a discussion with his neurosurgeon's office to get on the same page, it was decided that we would move forward with putting a helmet on Nicholas. The official term is cranial band therapy. We were preparing for a fight with our insurance and were pleasantly surprised to not find one and he is scheduled for his measurements on the 15th. 

We have been warned that there has been very little research done on putting helmets on hydrocephalus patients so the neurosurgeon's office is not sure that the helmet will be successful in reshaping Nicholas's head satisfactorily but we decided we would rather try and fail than not try at all and either always wonder if it would have helped or end up having to make him go through another surgery at some point in the future. That's not outside of the realm of possibility of course, but hopefully this can help us avoid it.