Trouble With the Curve

By now you all know that there is never a dull moment in this crazy life we are living.  Our boy keeps us on our toes constantly.  We recently were thrown a "curve" ball that we weren't quite expecting.  But then again, were we really expecting any of this?

Some of you know the majority of the story I'm about to share, some of you know just a portion of it and some of you don't know any of this at all.  So I'm going to start from the beginning.

It all started with an appointment about the structure of John's feet.  A little over a year ago, Tommy got a recommendation from our pediatrician for a pediatric orthopedist here in Houston.  He took him to have John's feet checked and to see if there was any cause for concern.  He told us there wasn't much to be done, other than to continue supporting them with orthotics (braces for his feet).  He recommended a different orthotist than we had been using, and one that he has done quite a bit of work with.  He wanted us to follow up with him after we got John fitted for new orthotics.  I took John to the follow up appointment.  It wasn't quite what I was expecting.

He did look at his feet and the orthotics and gave his opinion about what adjustments we might make for them to be more comfortable for John.  But then he started talking about something completely different than his feet.  He mentioned the curve in his back.  Now this wasn't new information to us.  John has had x-rays done in the past by his Physical Medicine & Rehabilitation doctor and she told us that he had a curve called Kyphosis, which is different than scoliosis.  But at the time, she said she wasn't concerned about it.  We discussed this curve with the new orthopedist and we discussed whether it was something common for kids with John's genetic syndrome.  Because there isn't a lot of literature about his genetic syndrome, we really don't know the answer to that.  He mentioned that there was a brace that could be worn to help correct the curve, but at that point, he didn't think it was necessary and he thought surgery wasn't even a consideration.

Months went by and we didn't think too much more about that appointment.  Over spring break, John had a follow up with the same doctor, and I was going into it thinking I was just going to get a new prescription for new orthotics.  When we got there, they took us straight back to x-ray and they took a few pictures of John's spine with him standing.  After waiting in the exam room, the doctor comes in and says that the kyphosis has actually gotten worse.  This wasn't all that surprising to me because I had actually been noticing without the benefit of x-ray that it looked worse.  The difference in kyphosis and scoliosis is that while scoliosis has more of a side to side curve in the spine, kyphosis is a curve from back to front.  This causes John to be hunched over.  It had become obvious to me that the hunching had gotten worse.  But the next thing the doctor told me, took me by surprise.

He thought it was necessary for John to start wearing a back brace to help correct the curve.  In his opinion, surgery was too risky for this kind of curve, and the brace was the best option for correcting the curve.  And here is the best part.  He wants him to wear this brace for 23 hours every day, UNTIL HE STOPS GROWING!  Y'all, the boy is not quite 13, so who knows how many more years he has left to grow.  This totally rocked my world.  But he sent me to a different orthotics place to get John fitted for this back brace.

Tommy and I knew that strapping John into anything for 23 hours a day would be difficult.  And then we saw the brace.

Does this look like something you could wear for 23 hours a day?  We got the brace home and tried it on him and quickly noticed a few things that would make wearing this difficult.  Number one, he can't really play on the floor with it.  Sitting on the floor in it is difficult, and when he is lying down, he can't sit himself up.  And another issue we noticed pretty soon is that we can't change his diaper with this on.  We would have to take it off several times a day, when he needs to be changed.  This would also pose a problem with sending John to school in this brace.  His teacher's aren't trained to take the braces off and put it back on the 3 or 4 times a day that they change his diaper.  With all of these problems factoring in, we decided to seek a second opinion.

A couple of John's friends here in Houston had been to a doctor in San Diego in the past couple of years to have their scoliosis corrected.  So I talked to these two super moms and got their opinion of the doctor out there.  Now, I know what you are thinking.  You live in Houston, home to one of the largest medical centers in the world.  Surely there is a doctor there that you could consult with.  And you are probably right.  But after talking to my two super mom friends, they raved about the doctor in San Diego.  This guy is a spine specialist and he does these kinds of surgeries all of the time.  He is very skilled at what he does.  Also, they say the hospital staff itself is fabulous.  They really couldn't say enough amazing things about going out west.  So, Tommy and I decided to get John's most recent x-rays, along with the ones he had from his physical medicine doctor and send them out to this doctor to review.  And then we waited for him to look at the x-rays and call us.

About a week later, we received the call we were waiting for.  The doctor was extremely kind and patient and spent nearly half an hour with us on the phone, giving us his opinion on what he could see from the x-rays.  We found him to be quite knowledgeable.  He also had a bit of a different opinion than  the doctor here.  He says that the brace won't correct the curve, but it will delay the curve.  He also said that the surgery really isn't any more risky than any other spine surgery. If we wanted to buy him more time, then the brace was the way to go.  He also said that with a younger child, he absolutely recommends bracing.  But with a child John's age or with someone older, whether to brace or not really comes down to quality of life.  He thought it was likely that John will need surgery eventually, no matter what we decided, but could make a more informed opinion if he saw John in person.  So we scheduled that appointment for April 30.

On the weekend before the appointment, we flew out to San Diego.  We wanted to have a couple of days to adjust to west coast time and to try and make a mini vacation out of it.  We were able to have dinner at the Hotel del Coronado, spend a day at the famous San Diego Zoo, and we even met up with the flower girl from our wedding and her little family for dinner.  Here are a few photos we took of our time there.

Ready for Take Off

Saturday night

Dinner View

Sunday Funday

He Loved the Bus Ride

Sunday Night with Family

Our appointment was scheduled first thing Monday morning.  The doctor came in and had a nice long visit with us.  We discussed his x-rays and the progression of his curve.  In 2011, his curve was approximately 36 degrees.  In 2016, his curve was around 54 degrees.  In his current x-rays, his curve is about 75 degrees.  With the rate of progression and with as big as the curve is now, he told us that we could probably wait another year to have surgery if we wanted, but he didn't think we would be able to wait 2 years.  If the curve gets too much worse, the surgery becomes much more complicated and risky.  So we left the appointment with a decision to make.  Do we have surgery this summer, or wait until next summer?  With a lot of information to process, we headed back to the airport for our trip home.

It's been a week and a half since our appointment and we have finally made a decision about when to have surgery.  But first, let me tell you a little bit about what surgery will entail.

In order to straighten the spine, he will have a rod placed in his back and vertebrae's T2 to L4 will be fused.  He will be in the hospital for 5-7 days, probably spending the first couple of days in ICU just because of his history with the trach.  Once he is released from the hospital, we will probably spend one more week out west before being allowed to fly home.  It is expected that he will be back to baseline in 4-6 weeks.  Because of the fusion of his vertebrae, his torso will not grow any more.  His arms and legs will still be able to grow, but he will likely not get much taller than he is at the time of surgery.  This of course factored into our decision.

So now for the decision.  We found out that the earliest the doctor could do the surgery was late July.  That is too close to the start of school for both me and John.  And because we weren't too keen on waiting until next year, we decided to split the difference and have it done in December.  This will give him 7 more months of growth, and at this age, it could be a big difference.  The date we picked is December 4.  This will give him the chance to have surgery, recover for 2 weeks and still be home in time for Christmas.  And he will have the remainder of his Christmas break from school to continue to recover.  If all goes according to plan, he should be good to go back to school in January.  He and I will both miss school for the first 3 weeks of December.  But that is an easier time to miss than the beginning of the year.

So that is where we stand today.  I will try and keep you all informed as we continue through the process, and certainly as we get closer to surgery time.  Please continue to pray for us along this new journey.  When John got his trach out, we called him John 2.0.  With a straight spine, he will be known as Johnny 3.0.  He keeps getting bigger and better, but he is still the sweetest, happiest, most loving little guy you will ever meet.  Thanks for always supporting us, no matter what "curve" balls are thrown at us.  We love you all!