Wednesday, April 3, 2013

Second Opinion

This week, our family traveled to Chicago to take Ian to see another scoliosis specialist to get a second opinion on his case. We drove down Monday afternoon and checked into a hotel a few miles from the hospital. Our appointment was on Tuesday afternoon, but Tuesday also happened to be Lydia's second birthday, so we wanted to spend the part of the day that we weren't at the hospital doing something fun for her. 

Both kids enjoyed spending Tuesday morning swimming in the hotel pool. We brought along an inflatable basketball hoop, and my cousin who lives in Chicago and his son - who is only a week older than Ian - came by the hotel and swam with us. Ian loved being lifted up to dunk the ball into the hoop, and Lydia couldn't get enough of jumping off the side of the pool into our arms. It was a really great morning.

After lunch, we had a little bit of time before we had to go to the hospital, and we happened upon a little candy store. We took the kids in and Lydia had quite the time looking at all the different candies. She wanted Jaw Breakers, but I found some "baby" gummy bears that were perfect for her. She watched excitedly as I scooped some into a bag and we had it weighed. She carried the bag around for hours after that, telling us all over and over "my candy". She didn't actually eat any of them until four hours later, when we were on our way home.

Lydia with her beloved baby gummy bears.

We arrived at the hospital a little before the appointment. Inside the entrance was a piano that was playing by itself. The keys were even moving while it played, and Ian was totally enthralled by this. We had to promise he could watch the piano on the way out to get him away from it and get to his appointment!

Ian and the "magic" piano.
At the appointment, we waited forever and answered a million questions about Ian that I had already spent hours answering on the hospital forms before the appointment. We were all getting restless, besides being eager to get home, but an hour and a half after our appointment time, we finally saw the doctor. He had reviewed Ian's medical records and the x-rays I had brought with us from our usual hospital, and was of the opinion that we should not be considering surgery to correct Ian's scoliosis yet. He said Ian's curve was doing well with bracing, and we should continue along that path until Ian is between 12 and 15 years old, and then do a spinal fusion surgery to correct the scoliosis. This is a more conservative approach than we received from Ian's orthopedic surgeon back home, who recommended starting Ian on VEPTR surgeries as early as this year.  

I left the appointment a little disappointed that this doctor didn't offer us some great, new, third option that we didn't already know about. Both paths to correcting Ian's scoliosis have pros and cons. Waiting and doing spinal fusion means Ian will have to wear a plastic brace on his torso for another eight to ten years, but it is a one surgery procedure. VEPTR eliminates the need for the brace, but after the initial placement surgery Ian would need to have day surgery every 6 to 8 months to lengthen the rod. This would need to be continued until he is done with puberty, so depending on when he starts it, it could be eight to ten years of surgery for him before it is over. Wearing a plastic torso brace can be uncomfortable, inconvenient, and limiting - especially for an older child - but constant surgeries are, well, constant surgery. Neither option is a cake walk.

Bottom line, I'm glad we took the time to see this doctor and get a second opinion for Ian. We still don't know what path we will take, but now at least we can take what this doctor said back to Ian's usual ortho and discuss it with him. We want to do what's best for Ian - to get him the best outcome and give him the best quality of life possible. 

2 comments:

  1. You've got some tough decisions to make. Ian looks pretty little, but does he have an opinion on what he'd rather do? It seems like there will be a lot of uncomfortableness (is that a word?) either way.

    Our daughter Is 14, but can't make any healthcare decisions for herself. For us a third opinion is sometimes the clincher, if insurance will pay for it.
    My thoughts and prayers are with you as you make these tough decisions.

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  2. Nicole, you really have some tough decisions and I wish you and your family the best, I really hope everything works out for you and look forward to reading you and Ian's Progress.

    @Sylvia hmm not sure, Ian is too young to make any decisions on his own and maybe Nicole would be better for that.

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