First, thank you, dear readers, for your emails and phone calls. Like the cardiology checkups, the blog evolved over the past few years into a different sort of communication, like an online scrapbook. When we were jolted back into the role of active “heart parents,” Charlotte’s journey took a new turn and the blog has been, I suppose, returned to its original purpose.
Charlotte will be fitted tomorrow with a Holter monitor. This is a tiny EKG machine that she will wear for about 24 hours. It tracks her rhythms over the course of a regular day, allowing Dr. Young to get a more detailed, more natural,picture than she can get from the five or ten minute stressful EKG in the hospital.
I don’t think Charlotte will be nearly as smiley tomorrow as she was in February, 2009. She told me today that the only thing worse than the stickers used to attach EKG leads is a strep test. She had one of those today (it was negative), so hopefully tomorrow will be easier than last week’s EKG. Especially because Philippe is taking her!
Dr. Young spoke with Dr. Jeffrey Gossett, the cardiac interventionist, today. He recommends we do a lung perfusion test as well. In case you don’t remember my March 4, 2010 post (!), here’s my answer your burning question, “What is a lung perfusion test?”
The machine looks something like an MRI. The patient has a dye injected into their blood that allows the camera to “see” the blood as it flows through the veins. For Dr. Young this replicates by camera what the Doeppler does via soundwaves, with the added bonus of guaranteeing that she can see everything she needs to. The test takes about 45 minutes, during which time the patient needs to lie still.
When Charlotte was in junior kindergarden, she bravely held still for the IV (maybe it’s just an injection) and then lay still for the perfusion study. She had Bubba, Driving Puppy, and a movie and she was SO brave. Frankly, I think she didn’t know any better. She didn’t even complain about being hot. Look at the bright pink cheeks and turtleneck sweater and you’ll see how inappropriately I dressed her for the occasion. (But, so cute, I know.)
This time, she’s terrified of the IV or injection, though I’m not sure she really knows what one is. She doesn’t think she’ll be able to lie still. Dr. Young asked if she’d need sedation. I responded that I think she may. Charlotte and I talked about it and now…well, now Charlotte is going to add “sedation” to her new word log for English. (Along with “traumatize,” but that’s another story for another day. Really.)
After the lung perfusion (on another day), Dr. Gossett will do the cardiac catheterization “to assess her hemodynamics and see if there is any intervention that could be provided to relieve any discrete area of obstruction should there be one.” That’s fancy talk for: we really hope that if any intervention is necessary a balloon procedure or stent will be adequate to improve any dynamics issues, and/or correct any narrowing or stenosis of the conduit or the artery.
I have every confidence in Dr. Gossett. Though he has not treated Charlotte, I met him a few years ago when I had the privilege to tour the new cardiac catheter lab that was funded by a Children’s Service Board commitment. As I said to Dr. Young today, if he can manage a bunch of giddy philanthropists as well as he did that night, he must have a wonderful bedside manner with children.
Charlotte is very scared. She doesn’t want to talk about this with her friends just yet, but we’re talking about doing a presentation to her class so that she can answer any questions all at once. (Thanks, Esther.) I have to talk to her teachers about this. Also, Charlotte is going to compile a list of questions for Dr. Gossett and then “interview” him for Charlotte’s Corner.
We had hoped not to have to think about any of this for another 5 or 6 years. I think we have been in some kind of denial about this being an ongoing condition, not a repair-and-done kind of thing. Right now, we have no idea what will happen after this flurry of tests and exams. With any luck, the catheterization will be the beginning and end of this saga for another long while.
I told Charlotte today to think of it like a tune up. She misinterpreted and started talking about it being like tuning an instrument. I suppose that works, too.