Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Six Month Checkup or Remember? Charlotte is a Heart Patient

Back in October I reported that Charlotte’s heart was doing well, but not as well as we would all like.  Dr. Young asked us to come back in six months to see if the numbers, specifically the diameter of her conduit and the gradient blood flow into the right pulmonary artery, were holding steady.  As the appointed date of the check up drew near, I once again held my breath. Charlotte has been growing like a weed and she’s been more tired than usual, The combination didn’t, in my mind, bode well.

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November 2013: Phil’s goofy beard courtesy of “Moovember”

Last week, I roused Charlotte earlier than usual and we headed to Lurie Children’s Hospital for our 7:30 a.m. appointment. Charlotte had an EKG and an echocardiogram, as usual.  The pressure across her conduit measured at a 52 degree gradient. With blood pressure at 100, that means that her gradient is about half of her systemic blood pressure.  It is roughly the same as our September visit and a bit higher than Dr. Young would like. Since her EKG and echo looked about the same; neither the valve nor the conduit seemed to be leaking; and there was nothing in her physical exam to cause alarm, Dr. Young said we could come back in a year for our next check up.  When that gradient hits 60 or above, we’ll have to discuss another catheterization and, possibly, a “conduit revision.”

Good thing Charlotte didn’t quite pick up that “conduit revision” means surgery; she was too busy telling us how horrible her leg felt after the last catheter procedure and that the only good thing about that night in the hospital has been that she got to eat breakfast for dinner (score 1 for the 24 hour “room service” at the new hospital!).

My heart thumped in my throat when I heard “conduit revision.” When she was a baby, she wasn’t scared. It's Almost Moving Day! Prepare to be AMAZED.She just toddled in to the hospital, charmed everyone around her, woke up groggy but smiling, and kind of forgot the whole thing rather quickly. Now, my lovely almost 9-year-old will get it and be scared.  And I fear the day she hears Dr. Young say that it’s time to consult with Dr. Gossett and Dr. Backer.

This is Charlotte’s reality–she will need more heart surgery, probably sooner rather than later.  In January 2005, Dr. Cuneo of RUSH Northshore told us that she might need as many as 3 valve and conduit replacements. She estimated–based on growth spurts–18 months, 7 years, and adolescence.  We eked out to 20 months and 7 years old is long since passed. So, I hold my breath and probably will continue to do so until it’s time to forge ahead, and be strong for Charlotte’s sake.

Now, for the important numbers: Since her last check up (remember, October 2013) Charlotte has grown TWO INCHES. She is now 4’9″. (Or was last week. I think she sprouted again recently.)

And now a word for our sponsor: Join Charlotte, Philippe, and I as we Move for the Kids on May 18. Team Charlotte will join the Children’s Service Board and work to make the CSB the leading fundraising affiliated organization for the third year in a row. I’d love for Team Charlotte to lead the charge–so if you even if can’t walk, please click on the image below and make a donation in honor of Charlotte, or your own favorite heart patient :-). We’ve built a new hospital and now we need to keep the philanthropic funds coming in to assure that Lurie Children’s Hospital continues to be one of the best in the country. Thanks!

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Cardiology–continued update

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.