Wednesday, September 16, 2009

Spinal Update

As you may remember, Harlie still needs to have surgery on her spine. We've been seeing a local orthopedic surgeon for check ups. While I like him just fine, he only operates at St. Mary's Hospital. And that hospital simply cannot handle Harlie. So, Harlie's cardiologist in DC recommended a surgeon there, which works out great. I am definitely most comfortable with her having surgery there. We met this surgeon back in the spring. And she agreed with our local doc that surgery would need to happen sooner rather than later, meaning sometime this year or early next. She ordered x-rays, CT scans and an MRI.

But then she had heart surgery. At one point I was thinking that they could do all that stuff while Harlie was recovery from heart surgery. But during her recovery I realized that was not an option. She had been through enough and her healing was way more important than those studies. They would have to wait.

So, after numerous phone calls and a whole bunch of time I finally got the scans scheduled for October 9th. During the scheduling, she asked me a bazillion questions. One of them was, "does she have a pacemaker?" Well, not exactly. She has the leads, but they are not hooked up to the battery device yet. The leads were installed during her first heart surgery at four days old and were placed for future hookup, when needed. She put me on hold for about 5 minutes. And then came back to tell me that she cannot have an MRI. As long as she has those leads, she cannot have an MRI. Here's why. And I'm thinking that she'll have those leads for as long as she has her own heart. This is quite unfortunate. I had no idea this was the case. Not that it matters, really. We couldn't have done anything differently. Still, it's pretty scary to know that she cannot have an MRI. An MRI shows soft tissue, while a CT scan shows bone. And a lot of stuff can grow in soft tissue. And it doesn't make me feel very good about going into spinal surgery without them being able to see her cord clearly.

So, I've been speaking with the surgeon's coordinator about it. She's spoken with her surgeon and they are ordering some additional studies in hopes of being able to piece them all together to give them the best information possible.

Now, just today I realized that we don't have an appointment scheduled for after these studies are done! Can you believe that? Once she sees all the information we have to talk about what procedures she thinks Harlie needs. And then we'll need to set a surgery date. So, tomorrow I'll be on the phone to schedule that appointment. I just hope that I don't have to wait three months to get in to see her!


Susan said...

Big sigh and hug. Nothing can be easy can it?! So much always to consider.

Heather said...

I swear Christy. can anything be easy? straightforward? simple? it's not looking like it! sending some silver lining vibes your way.