Countdown to surgery

As I said in the last post, it was very difficult to find information on the Internet, and also scary because I didn't know what might apply to Tyler.  So I stopped looking online.  I just kind of ignored the scoliosis most of the time because Tyler was developing normally and the curve was still progressing slowly.  Dr. Song at Children's Hospital in Seattle saw Tyler every 6 months, but was happy to just watch and wait as long as we could before performing the first surgery. 

The best option for Tyler is the VEPTR (Vertical Expandable Prosthetic Titanium Rib) implant.
 Here is a website that further explains the device:  http://www.seattlechildrens.org/clinics-%20programs/orthopedics/research-and-advances/veptr/
The implants are titanium rods that can be best compared to curtain rods or locking metal tent poles.   The 2 rods fit together, one inside the other, with a slide locking mechanism that allows doctors to expand the rods as a child grows.  These were developed for kids with severe chest wall deformaties, but are also widely used for kids with significant spinal curves as well.  The rod  first is implanted along the spine (attached from vertebrae to vertebrae for Tyler) and sometimes another parallel to the spine attached to the ribs.  The VEPTR was designed to be a device that will grow along with a child and is expanded every 6-9 months until a child reaches at least 10-12 years old but ideally until skeletal maturity is reached, around 16 years.  The great thing about the VEPTR is that it basically buys a child time, growing time, before a spinal fusion has to be done to lock the spine into place.  Once a fusion has been done, the vertebrae involved do not grow.  This can be a serious problem depending on the location of the fusion.  If it is too high in the chest cavity it can impact the growth of the ribcage thus creating a problem for the growing heart, lungs and other organs protected by the ribcage. 

Although this is the best option, it is also the one that involves the most surgeries.  Once the VEPTR is implanted, it needs to be expanded every 6-9 months until skeletal maturity.  That is a LOT of surgeries.  I have read stories about kids who have the VEPTR implanted as an infant.  Many of those kids will have 30 or more surgeries before they finally finish up with a spinal fusion.  That is one of the scariest things about the device.  That is also the reason why we were all happy to just watch and wait.  Every year we could wait meant fewer surgeries for Tyler. 

In August Dr. Song finally decided that we had waited long enough.  Tyler's scoliosis had progressed from around 50 degrees to 80 under traction, and Dr. Song has said:  "The larger the curve, the harder it is to correct". 

We scheduled the surgery for the beginning of December, but it had to be rescheduled.  I learned in November that Dr. Song had accepted a position as the Chief of Staff at Shriner's Hospital in L.A. and his schedule had been rearranged to accommodate the transition.  We were rescheduled for January 4th.  I really have confidence in Dr. Song.  He was one of the doctors that helped pioneer this procedure and developed an entire program of patients who come to Seattle from several different states for VEPTR procedures. 

Now we are counting down to surgery.  With less than a week to go now I am still trying to ignore the surgery, which is supposed to be a 2 hour procedure.  Dr. Song will start with one implant on the right side of his spine and see how well the curve is supported.  He will add another rod if needed, parallel to the first on the left side of the spine.  He doesn't expect Tyler to spend the night in the ICU, but reserved a spot just in case.  Then Tyler will spend around 4 days in the hospital recovering.  Once we get home recovery will continue for a total of 4 weeks of recovery.  I am praying that it is less.  Tyler is very healthy and active, unlike many of the other children who get the VEPTR, so I hope his recovery will be faster than average.  Tyler told me that he wants to stay zero days after the surgery and will surprise everyone and get up and run out of the hospital, and it would be a blessing if he could. 

Sorry this has been such a long post, the future ones should be shorter.  I want this to be helpful to families who might be looking for information, so I tried to be informational! : )

The last 5 years

I was 20 weeks pregnant and Joey and I were ecstatic to learn at our 20 week ultrasound that we were having a boy (Tyler).  He was our first child and we couldn't have been happier, but that happiness quickly turned into worry.  As the ultrasound progressed I knew something was wrong.  The technician repeatedly viewed his spine and then told us that she was going to grab the doctor to look as well.  She returned with the doctor who also spent a lot of time looking at the baby's spinal region, but they did not say anything.  I remember just lying there watching the screen and knowing in my heart that something was not right.  When they finished the ultrasound they simply said that my O.B. would review the results with us upstairs.  As the elevator doors closed I told Joey "Something is wrong.  I don't know what, but something is wrong." 

We waited for what seemed like forever before getting into the exam room and still longer to see my doctor.  But when I asked her about the results of the ultrasound, she looked dumbfounded.  She had not heard anything about it, but quickly left the exam room to find out.  When she returned to the room she explained to us that our baby had a spinal abnormality called Congenital Scoliosis.  I didn't really have any idea what that would mean for him or us, but I burst into tears.  She quickly set us up with several appointments in Seattle at the UW Medical Center.

The day was heartbreaking.  We were so scared, not knowing much about scoliosis we went to the Internet.  Bad idea.  The Internet has so much information, from so many sources.  We just ended up more confused and scared.  Congenital Scoliosis is rarely discovered in utero which made it even more difficult to find information. 

We learned the next day at the UW that Tyler had a significant curve due to several hemivertebrae, half vertebrae that are shaped like triangles instead of rectangles.  Vertebrae are supposed to be shaped like rectangles that are stacked on top of each other to create a straight spine.  However, when some are shaped like triangles, that creates a curved spine. The specialists told us that Tyler would most likely need to have surgery after he was born.  We were crushed.  The last thing expectant parents want to hear is that their baby has a birth defect that will need surgery.  Then we were set up with an appointment to see Dr. Song, an orthopedic surgeon at Seattle Children's hospital.  He looked at the ultrasounds and told us something that surprised us both.  Dr. Song said that Tyler would not need surgery immediately, and that we would just monitor him with x-rays every 6 months. 

So that is exactly what we have done for the last 5 years, starting when Tyler was 2 months old.  Tyler was born a healthy and very active little boy.  He has a kind heart and an inquisitive mind, and a body that is constantly in motion.  You wouldn't know that he has congenital scoliosis if you saw him playing.  He keeps up and often surpasses his peers in his physical abilities.  Tyler never walks if he can run, will climb over rather than go around and keeps on going through bumps and scrapes.  Often at his 6 month checks I was asked by various resident doctors, who would pop in before Dr. Song, if Tyler could keep up with his peers.  They said it with such concern and even would ask again when I said "yes" as if they could not believe that it could be true.  Usually Tyler proved the point quickly by scaling the exam table then jumping around to show off. 



Tyler loves to run.  He is flying his airplane here the day after his 5th birthday this July





Well, this is enough for one post.  I will bring you up to present in the coming posts.  Thank you for reading, we hope Tyler's story will be helpful to families with kids just like him.