Wednesday, March 2, 2016

Dangerous Curves Ahead

Before Evie turned one, I nearly drove myself insane because I believed she was developing a curve in her back. It was small. Tiny really. Nothing that someone who didn't regularly rub her back would even notice. But I did. I held her and rub her back every day. I just knew something wasn't right.

It was confirmed before her first birthday. She had an eight degree curve. Now I know that isn't severe and I didn't really flip out because from everything I read that was manageable. I knew progression of the curve was what we wanted to slow down. I asked about options and at eight degrees there really aren't many outside of therapy. We took a wait and see approach.

Fast forward through a few visits with her orthopedist and that tiny eight degrees did indeed progress (which I expected). Her scoliosis curve shifted from 8 (2011) to 18-20 (2012), then from 18-20 up to 40-45 (2013), and finally from 43 (2014) to 59 (2015). Now there is a margin of error to consider of 2-3 degrees up or down on that scale, but those numbers and her rather rapid progression meant that her scoliosis was not going to be manageable by bracing and therapy alone.

Life at 59 Degrees
November 2015

Every time she had a growth spurt so did her curve. Now we've gotten to the point that her hip is curling up and she can not correct herself at all. When she attempts to stand, without her brace, it doesn't take long before she is tipping to her left and falling (full disclosure: she can't stand independently at all).

In early 2015, I asked her orthopedist at what degree level do we start considering surgical intervention (TIP: never ask a question that you don't want to know the answer to) and in a very direct manner (which I appreciate) he stated fifty degrees. I breathed a slight sigh of relief because we were still sitting squarely at 43 degrees. We scheduled our next appointment for November and went home with our brace and some big things to consider (and favorite thing).

November was a tough month for our family. On the day of Evie's orthopedic appointment, I ended up in the ER with three IV's stuck in my arms and nurses swarming over me. It was the first time I wasn't able to attend her appointment and I knew it was going to be the BIG one. The same gut feeling I had when she was about 9 months old was telling me that her scoliosis was worse. Surgery was going to be on the table. My baby would have one more, very long, scar to add to her growing collection (one muscle biopsy, two hip scars, and a g-tube).

The news came. I screamed (probably scared the ER personnel). The doctor tending me rushed to my side begging me to calm down (my emotions were affecting my blood pressure which was dangerously low). I pushed the phone away and refused to talk to my husband anymore (fyi: he had no idea how serious my situation was, my mom was waiting until after Evie's appointment to tell him EVERYTHING).

Surgery was officially on the table and, much to my surprise, my husband told her doctor to put her on the waitlist for a surgical date. I would have done the same. (TIP: Over the years I have learned it is better to get the appointment or be added to the waitlist and then think over all the options and necessity. You can always cancel the appointment or remove your name from the waitlist later. No harm. No foul.)

The short version of this story:

Evie is scheduled for spinal surgery at the end of March. She and I will be taking up residence at our local children's hospital the day prior to surgery and will be there for three-four nights. The procedure she will have is called MAGEC and they are growth rods (more about MAGEC coming soon).

This WAS NOT an easy decision. I spoke with many people whom I respect and researched scoliosis a second/third/fourth time (the information was still the same as it was in 2011). We know the risks. We trust our team.

I feel at peace with this decision. I have been preparing myself for this since the curve increase of 2013. I know this is out of my hands. I know who holds the future and we will persevere.

*I promise to keep the blog more current as we go through this process.

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