Sunday, April 14, 2013

Racing, Racing Heart

...from my art journal...

Lately I’ve been dealing with a racing heart. Racing and racing and going nowhere. We can chase down the reason for this metabolically and we’d find that my adrenal glands are pooped out, despite my (and my health practitioner’s) best efforts to support them, help them, care for them. I’m not done figuring out what they need, and I must continue to live with the racing until it resolves.

But tonight I lay in bed and noticed that my heart pounded on and on, my mind wandered through a vast territory of thoughts and musings, some anxiety-provoking, but not all. I can be the best perseverator around. I can find something good to chew on that will only get me worked up and I did and then abandoned it for something else and then found another thought to chew on.

I switched positions. I rolled over and adjusted the twelve pillows I use to prop up my body parts. I noticed the pain that is almost always present these days in my right hip. I tried not to perseverate on that for too long.

And finally, the thought that’d woken me up, I’m sure of it, that had been working its way to the surface of my consciousness bobbed up and once it got there I was wide awake. There was nothing more to do. No denying it.

In just about a week we will go to see Ben’s surgeon at Shriners Los Angeles and we will discuss the next steps in his scoliosis/kyphosis treatment and I will have to face (and he will have to face) what that will be.

Ben was diagnosed with scoliosis when he was eight years old. He had a sudden onset, as far as we could tell, and that suddenness sent us scurrying to the radiologist to get x-rays and then an MRI and at that point we found ourselves dealing with other issues, immediate brain surgery, and all that followed. After the trauma of that, (four surgeries instead of one, 40 nights in the hospital instead of six) the last thing we wanted to do was spend more time in a doctor’s office so, to be perfectly frank, we pretended that the scoliosis wasn’t an issue and just tried to recover. This was something we all had to do, not just Ben, but of course, mostly Ben. And as his mom, I really didn’t feel like pushing it. Covering it up, patting that knowledge of the lurking scoliosis on its ugly head, and saying, “Shhhh, shhhh…” was what I’ll now admit I did.

So it was that three years later at his check up with his neurosurgeon at Oakland Children’s Hospital we heard, “I think we should get an x-ray of Ben’s spine.” And hence we found that his curve had not righted itself (a quasi-miracle which sometimes occurs after Ben’s kind of brain surgery) but, in fact, had worsened from 27 degrees to 35. We were sent to the orthopedic clinic soon after and told that Ben needed to be put in a brace for 22 hours a day for the rest of his childhood (he was 11) or until his curve reached 50 degrees at which point he would need to have his spine fused.

We walked out the door and RAN to the internet to find out what we could do that wouldn’t entail coercing our most belligerent, obstinate, stubborn, and already medically traumatized child into wearing a hard plastic shell round the clock for the next eight years. We had already done the research on bracing and knew that its results were likely to be nil. For children who had curves of 35 degrees before age 11 there was a 98 percent chance of reaching 50 degrees before their spines were fully grown. That was our reality.

We found a lot of scary things, a lot of treatments that sounded pretty sketchy, and then, thanks to a dear friend who loves to do medical research on the internet, we found Shriners Hospital in Philadelphia where their Chief of Staff was experimenting with several different methods of halting and slowing down the progression of scoliosis in children like Ben. A trip to Philly a few months later and Ben was officially their patient.

Here’s what we signed on for initially: Vertebral Body Stapling. A one-time surgery to have staples implanted in his spine to pull together into straightness the offending vertebrae where his curve was greatest. The staples would act as an internal brace and thus he wouldn’t need the ineffective external brace (which one orthopedic surgeon we talked to in San Francisco admitted was a medieval torture device). This sounded like a good trade off. It had good results, although it was still quite experimental. We joined an online support group for parents of VBS patients at Shriners and got lots of great information.

But by the time Ben’s surgery rolled around (nine months later…we had tried other non-invasive techniques in the interim AND he had worn a brace for part of that time) his curve had progressed and their research data was showing that curves as severe as Ben’s needed more support than just the staples. He was now scheduled for staples and a hybrid rod which would be hooked onto his lower spinal vertebrae and his rib cage and would need adjusting (for his growth) every 6-9 months.

The thought of this was frightening; the reality of this was harrowing. For the past three years Ben has had to undergo surgery twice a year, in Philadelphia. This means he has constantly been heading into a surgery, recovering from a surgery, or been living in the few months of limbo between those two states. He’s been going to physical therapy twice a week for two years. He’s traveled to Philadelphia seven times.

But you know all this (if you’ve been reading this blog).  

Our original goal was twofold. First, we wanted to give Ben’s spine time to grow, to reach its potential. Compared to Harry, Ben was tiny, and he had so much growth left to go in his spine. Stunting this growth with fusion would have impacted his organs and their potential growth as well. Second, we wanted to maintain flexibility in his spine as much as possible. That’s the beauty of VBS, which was one of the main reasons we loved it as a solution. Fusion will likely mean 12 of 24 vertebrae will be fused into one long bone…flexible? Not so much.

What I really want you to understand is that as much as I’d like to think of this next step as “OH, THANK GOD WE ARE FINALLY DONE with all this surgery and travel and antibiotics and pain killers and heading into and out of surgeries,” the truth is that I am TERRIFIED about this next step. TERRIFIED about its implications for the rest of Ben’s life. TERRIFIED that we’ve used up his nine lives. TERRIFIED of seeing him in pain, tremendous horrendous pain again.

And mostly terrified that just as he is emerging into his real, core, physical self again we will be sending him careening into a wall of suffering and immobility. A spine fused more than half of its course, with such limited flexibility that he will forever need to bend at the knee and hip to pick up something he’s dropped on the floor.

As much as I am glad he won’t have surgeries hanging over his head anymore, the thought of putting him through another major surgery, his third 10 hour surgery in his life, makes my heart race. Makes my adrenal glands pump out just a bit more adrenaline.

I have friends, from that original VBS parent support list, whose kids had the same exact surgeries Ben had, the staples and the rod, the adjustments, too. And their kids ended up with fusion earlier than we did, their kids are already past the one year recovery mark. They know what I’m going through, and what Ben will go through, and they also know their kids are fine now. Yes, they still have pain and it’s not a perfect solution, but you can live with it.

And maybe I’m just making a bit too much of all this, maybe I’m being a bit too much of a drama queen about it. Ben’s had time to grow. His spine has probably reached about 90 percent of its growth potential now. He didn’t have to wear the medieval torture device for the past three years. He will ultimately get to be a physical person again, with time.

I’ll know more in a week. But for now I am venting, and racing, and panting. No surprise then as to why my adrenal glands are so tired. It’s been a long race. And it’s not over yet.


Barbara H said...

Thank you for sharing your heart!

Gillian said...


Kimberley said...

Susie, I love you so very much. My thoughts and prayers will be a constant as you, Ben and your family go through this. Call me for any respite you need!

Anonymous said...

Yes, thank you, Susie, for sharing everything racing through you and into Ben and then back around again.
Hopefully, you and Mark will find some calm in the eye of the storm--during your talks with Dr. Cho. After that, we're all here for you guys in any way that you need, esp. listening, loving and supporting.