The Post Surgical Splint

In preparation for the surgery, Brian has seen a few doctors.  His cardiologist gave him a stress test - Brian has a heart murmur and it's better to be safe.  The orthodontist made a mold of Brian's mouth and did a bite registration.  Then our surgeon's orthodontist took final x-rays, a surgical model, another bite registration and measured Brian for the surgical splint.

The splint was curious to me because my impression of a splint is two sticks tied to a broken leg.  I just couldn't figure out where the sticks would go on Brian's face.  =)  It turns out, Brian's splint is similar to a mouth piece or a mouth guard.  It seems easy enough, but how long would he have to wear this splint?  Well, the splint will be wired into Brian's mouth for the entire time his jaw is wired shut. 

My first thoughts are to Brian's breathing - Brian typically breathes through his mouth.  With the deviated septum and his jaw wired shut, I had to raise my concern for his breathing with a splint in his mouth as well.  The surgical orthodontist, smiled and laughed a little and then simply told me that they prefer their patients to live.  This orthodontist is wonderful, and believe it or not, that is exactly what I needed to hear.  They will ensure Brian has an airway to breathe through.

Reading through doublejawsurgery.com though, I see normal breathing is a common complaint with jaw surgery patients and the splint is not a favorite.  However, Brian will get through it and these things are manageable.  It is important to keep your eye on the end result...the goal.  Things will come up and then they will pass.

Only two appointments are left - touring Phoenix Children's Hospital and the pre-op appointment with the surgeon on June 6th.  For today, it is Memorial Day and our family will be going over to my sister's house to swim and grill.

About Health Insurance - the approval.....

I realized I forgot to mention in my first post, our health insurance did finally approve Brian's surgery a few weeks ago.  Doug and I could not have afforded this surgery if we had to pay for it out of our pockets. 

Brian's first surgeon required cash upfront.  I initially thought Doug and I could apply for medical loans to cover it - but it turned out these loans are not easily obtained in this economy.  We wasted an entire year with our first surgeon because I believed I could figure something out. 

I finally admitted to myself that I could not afford this surgery on December 24, 2010.  That day my Dad drove Brian and I to Phoenix Children's Hospital.  I did not know anyone there; I was simply looking for options.  To my amazement, the staff there took the time to talk to us about Brian's situation.  The admissions office provided me a list of surgeons I could contact.  That is how I found Brian's current surgeon, but there were still obstacles to overcome.

1. The surgeon rarely accepted jaw patients because of the difficulty with working with insurance companies.  However, once she examined Brian, she agreed to take him on as a patient. 
2. Orthodontic re-work was required because the new surgeon's surgical plan was so different than the first surgeon's surgical plan.  Brian would have to return to orthodontic care for nearly a year.

It took 5 months from the time Brian was orthodontically approved for his jaw surgery to be approved by the insurance.  The insurance denied several pre-authorizations and claimed required paperwork was never received.  The insurance also tried to state that there was an exclusion on our policy; however, no one could ever show me the exclusion, in writing, anywhere on our policy. 

Verbally, the insurance told me that Brian could only have the surgery if he had one of the following:  Cancer, Traumatic Injury or Sleep Apnea.  Although Brian had not been screened for sleep apnea, I knew his facial structure was made for this condition.  Sleep apnea is when a patient stops breathing multiple times for several seconds during sleep.  Brian's deviated septum, enlarged tongue and his jaws made him a good candidate for sleep apnea.

We had Brian tested, and he was found to have mild sleep apnea, which does not usually require surgical intervention.  I was hopeful because he does have sleep apnea, but cautious because I knew this might not be enough for the insurance.

After weeks of the surgeon's office going back and forth with the insurance, the insurance finally arranged a phone conference between our surgeon and a surgeon/doctor from the insurance company.  The conversation lasted about 20 minutes, and at the end of the conversation - Brian was approved by the insurance to receive his jaw surgery.

The moral of the story to families out there going through this is - don't give up.  Keep trying - get the tests done that the insurance needs - read the medical policy for your insurance - ask questions - and most of all, find a surgeon who will work with your family situation.

I apologize this was such a long post - but I wanted to get it out there for other Mom's looking for answers.

For now, Brian is looking forward to the surgery, but it seems more real to him everyday.  He and I talk about what foods we can put into the blender.  =)

Jaw Surgery Scheduled for 6/15/2012

The jaw surgery is scheduled for June 15, 2012.  It seems so close after the years our family has spent working towards Brian's jaw surgery.  Just getting to this point has been a challenge and we are all struggling to imagine the challenges that lay ahead.  There is excitement, fear, exhaustion but most of all there is love.  My job as Brian's Mom was to make sure he had this opportunity - his job is now to walk down the path to full recovery with all of us at his side and cheering him on.

Orthognathic or jaw surgery is expensive (about $40,000) and seldom covered by health insurance.  Health insurance likes to classify this procedure as "cosmetic" rather than medically necessary.  My son's upper jaw is extremely narrow and his bottom jaw is extremely wide - basically his upper jaw can fit into his lower jaw.  Here's a look at some of Brian's symptoms:

• Speech impediment - after 6 years of speech therapy
• Mouth breathing - impacting activities
• Teeth do not touch unless Brian moves his lower jaw to one side or the other
• Unable to chew food with his mouth closed
• Unable to close mouth unless a conscious effort is made to raise his lower lip
• Sleep Apnea
• Flatness in face under eyes and difficulty smiling - ok this one is cosmetic, but I want my son to be able to smile freely.

Not to mention his deviated septum.  One side of his nasal passage way is basically completely blocked and the other side is mostly blocked.

Brian is 18 years old now, he has lived this way all of his life.  His experiences have helped shape the man he has become, but it was not an easy road to travel.  Children and even some adults can be so unkind.  When Brian was younger, he would share difficult times with me; however, as he got older, he kept these events to himself and managed them internally.

Just two years ago, Brian switched schools.  One of his teacher's asked Brian to read aloud, so he began to read.  The entire class burst out laughing at the way Brian speaks.  Brian never told me about this, someone else did.  I asked Brian why he didn't tell me and he said that the people who laughed are just kids and either the kids would figure out that he is just a regular guy or they wouldn't. 

He said, "Mom, it's ok".  He has said that to me many times over the years.

Well, perhaps this is a good overview of our family's journey to this point - 3 weeks prior to Brian's surgery.  There will be more posts and daily posts after the surgery.  I got the idea to blog from Graham (http://doublejawsurgery.com/) - he is simply amazing.  I hope by blogging about Brian's surgery - other families will find courage to move forward even when it feels every door has closed around them.

More to come....