Day 17 (July 2, 2012) - Bottom Jaw Unwired

Brian had his bottom jaw unwired after 17 days.  The splint remained in place on the upper jaw - this will be removed Wednesday, July 18th.

When Brian's jaw was unwired, he was very sore.  The splint has a lip on it that prevents Brian from closing his mouth unless he pushes his bottom jaw forward about an inch.  His lower jaw was wired in this position, so this explains the soreness.

With the bottom jaw unwired, Brian has moved on to a soft diet - pasta, oatmeal and anything he can swallow whole.  The splint prevents chewing.

The swelling is almost completely gone and already Brian and I can see difference.  Even with the splint inside his mouth, one can see the back part of the roof of Brian's mouth and it is much wider.  Amazing!

Day 9 (Sunday) - Life returns to normal

Tomorrow I will return to work.  Doug will spend next week with Brian as needed.  I have been completely amazed how well all of this has gone.  Brian is doing so great.  The swelling is down and the pain level has remained low through the entire time.

Our biggest issue is how to keep Brian fed and watered =)  But even that has been less of a challenge than we initially anticipated.

I will probably not blog daily anymore.  Brian does have another surgery coming up in a few months - a deviated septum and possible cheek reconstruction. 

Brian has mentioned he will add a blog closer to the end of this - to recap the things I may have missed.  I am thankful to our friends and family for helping us through this.  More pictures to come.

Day 8 (Saturday) - Brian Goes Out

Brian's friend from middle school had a birthday party in Surprise.  I struggled letting him go, but he really wanted to be able to attend.  Remember, I haven't left Brian's side since the surgery (except for Saturday night, Doug stayed with Brian at the hospital).

Brian's recovery has been remarkably smooth.  There had been no problems.  The pain has been minimal.  Brian has fully adjusted to having his jaw wired shut - and manages his nutrition and hydration exceptionally.  All of this contributed to my decision to let Brian go - but Ronnie and I stayed on that side of town.  I couldn't be too far away.

Ronnie and I went to lunch - then shopping - and finally to see a movie.  Five and a half hours later, I was back to pick Brian up.  He had a blast with his friends - and everything was fine.

Day 7 (Friday) - One full week

It's hard for me to believe I will return to work on Monday.  Doug will be here with Brian next week.  Today I will take Booger to the groomer and things are very normal.

Brian is sketching and finding ways to pass the time.  Sunday dinner is at my parents' house - I think we will go over for a while.

Day 6 (Thursday) - Drinking from a Cup

Pain level remains at a 1.

Brian was thrilled to find he has enough feeling in his lips now to drink from a cup.  The sofa bed is put away - Brian has moved back into his room at night.  His spirit is up and recovery seems to be going extremely well for him.

He asked to go to a friend's house on Saturday.  I am hesitant because I still feel the need to be with him, but he appears up to the challenge.  Brian has been going with me to the store and to run errands.  I worry that people will stare at him, but Brian is just thankful to be out of the house.  He is an amazing son.  I love him! 

More pictures to follow.  Brian has the cutest smile ever - if I can catch it on camera.

Day 5 (Wednesday) - 1st Follow-Up Appt

Pain is still at a 1.

Brian had his first follow-up appointment today with the surgeon.  The surgeon was pleased with his progress so far.  Brian is down to 120 pounds - from 128 on surgery day.  It is to be expected, the surgeon said.  He just needs to try an maintain this weight.

Brian was cleared to use a waterpik - so I bought him one today.  Ron and Brian had a good time trying to figure out how to work the darn thing in the bathroom - small mess, but lots of laughs too.

We also went to a smoothie shop and spent $20 on 3 drinks - lol.  I think I will listen to Beth and just make them at home.  =)  I have that fancy Bullet blender - that has proven to be worth its weight in gold.

It was a good day for Brian - he smiled so much his cheeks are sore tonight.  Brian even put up the sofa bed - I think he wants to be done, but there is still recovery time to be had.  We will get there.

Day 4 (Tuesday) - Brushing Teeth

Brian rated his pain level a one today.  Grandpa brought over History of the World for us to watch - Brian, Jay, Grandpa and I.  Grandpa also brought over some drawing supplies from Grandma.  Brian sketched a little today.

It was a big day because I was determined to get Brian in the shower and then take him outside for a little walk down the block - just to see and feel the sunshine.  Brian was up to the challenge and even decided to take on the task of brushing his teeth.

We started with sponges on a stick for the inside of his cheeks, but then Brian busted out the toothbrush and managed to brush all of his teeth thru the bands.  It was amazing - a little scary because we just aren't sure where the incisions begin.  But when all was said and done, Brian felt like a new man.

Doug rented John Carter for us to watch tonight.  Tomorrow, Brian has his first follow-up appointment with the surgeon.  Things are going very smoothly.

Day 3 (Monday) - Home

Brian had a good day today.  His pain rating remains at a 2 and he is not taking any pain medication during the day. 

So, yesterday Doug and I learned that we need to make Brian smaller portions as he adjusts to his new diet.  I was so eager to let him have something other than clear liquids, that I made him a pretty big smoothie when he first got home yesterday.  He took 3 swallows and he was done.  Small portions - more frequent but small portions.

We noticed some bruising around his cheeks today, but his face is still pretty numb.  He chuckled at the fact that he cannot feel underneath one of his eyes still.  I will have Doug take a picture.

Day 2 (Sunday) - Going Home

Brian was moved out of ICU to a regular room on Saturday.  I have been amazed with Brian's reports on his pain levels.  Immediately following the surgery, Brian rated his pain level at a 4 on a scale from 1 to 10.  Saturday he rated his pain at a 3.  He reported his pain as low as a 2 on Sunday.

The challenge with this surgery is not pain, thankfully, but rather it's the harsh adjustment to having your jaw wired shut.  Brian had hoped there would be an opening somewhere that we could get food inside his mouth, but there is no opening.  Brian literally has to wait for the fluids to seep between his teeth - it only takes a few seconds but it is an exhausting process.

Brian was released from the hospital at 10:00 am on Sunday.  We pulled out the sofa sleeper for Brian and we watched movies together while getting use to Brian's new routines of hydration, nutrition and medication.  He also needs to irrigate his mouth with a special mouth wash 4 times a day.

I slept with Brian on the sofa Sunday night, but I think I kept him awake most of the night coughing.  He never complained - I swear he pretended to sleep right through it.  I think we were both just so thankful to be home.  I love you, Brian, you are doing GREAT!

Day 1 After Surgery

Brian woke up this morning still in ICU.  At 7:00 am they removed the second tube from Brian's nasal passage (this was in place to keep his stomach empty).  There is no way to prepare of this removal, but it is over quickly...10 seconds.  Brian was glad to have the tubes out of his nose.

He has become a master of the suction pick for his mouth and continuously made great strides in his recovery.  The nurses told him he would either go home today or would move to another room outside of ICU.  Brian started taking the steps he needed to to go home - stood up, began managing his own liquid intake (no iv) and stayed away from the oxygen mask (which had brought Brian a great deal of comfort right after surgery and the first night).

But after checking with the surgeon, they determined Brian needed to stay one more night just to be safe, but they did allow Brian to move out of ICU.

Personally, I was relieved Brian is staying one more night.  He looks so much better than yesterday, but still has strength to regain.  Pictures to follow soon.

The Surgery and ICU

Brian was in surgery for 3 hours.  There were no complications; however, the surgeon decided Brian should start his recovery in ICU.  It took another hour for me to be allowed to see him.  A long wait and it was difficult to see him the first time because the anxiety was clearly expressed in his eyes.

I do not believe Brian or I were fully prepared for what recovery would be.  I understand now that there are some things you cannot prepare for.  Brian's mood was irritated and scared, but his pain level remained at a 3 or 4 through surgery day.

Brian took his second dose of morphine at 5:00 pm, but because it made him feel nauseous, he did not take anything else for the pain until Saturday afternoon.  See, at 10:00 pm Friday night, Brian's and my greatest fear was realize - he vomited.  Normally, this would not be a big deal; however, his mouth was wired shut.  I will spare the gory details, and will just say Brian handled himself wonderfully and we got through it.

At 2:00 am, Brian woke with a bit of energy.  There was a cheerfulness to his eyes and he decided he wanted to chat, even joked a little.  He said he could feel the difference in the shape of his mouth and he seemed very impressed.

Sleep did not come easy to either of us that first night.  The average sleep interval was 10 minutes.

Surgery day

Surgery day. We made it here- grandma, grandpa, aunt Missy, Doug, Ron and I. Things were running a bit behind but Brian is in surgery now. The delays initially seemed to cause Brian some stress, but then they gave Brian some medicine to help him relax. About a minute after that medicine went in, the biggest smile I have ever seen slid of Brian's face. Magic, no more stress. I will update more once Brian is out of surgery.

Pre Op Appointment

The tour of the hospital and the pre op appointments were last Wednesday, June 6^th.

We all went with Brian – Doug, Ronnie, Deseree and I.  Brian and I had made a list of 17 questions for the surgeon – we wrote them down to ensure we would not forget the questions during the appointment.  We managed to get our questions answered and I learned something.  Not all surgeons are personable or maybe they just have trouble relating to us mere mortals (who do not do these surgeries on a regular basis), but when push comes to shove I would prefer a skilled surgeon to a friendly surgeon any day.

The tour of the hospital was fun and reassuring.  We feel like we know our way around now.  The plan is for me to stay at the hospital with Brian.

Last night we took Brian out for a nice steak dinner with Grandpa.  Today Brian goes in to have his surgical hooks installed.

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....