Charlotte's Journey Home

Just a Regular Kid, Sort Of


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On the 366th Day We Rejoice, A Cardiology Update

For most of the year, we can ignore that Charlotte is a heart patient. She keeps up with her friends, grows so much that we forget the terrible “failure to thrive” days, and seems about as regular as the next kid.

That was different last year, of course, since she had to take a break from her regularly scheduled awesomeness to awe us with her post-heart surgery resilience. Charlotte recovered beautifully and returned to regular activities on schedule. She trained for a 5K and took tennis lessons. Once her surgical wounds had healed, she moved on. Sort of. If we didn’t talk about the scar. (That’s another story for another day. Suffice to say that a preteen girl is self-conscious about a new scar.)

Then she had her six month check up and the scar began to fade. In the past few months, the surgery has become an anecdote. “Remember when I was mean because I was taking Dilaudid?” “Remember what I said when they removed my breathing tube?” “I didn’t mind the hospital so much. I got to have pudding for breakfast and got lots of presents.”

Yesterday we were reminded, as we are each year, that heart surgery isn’t the stuff that normal childhood memories are made of. It’s real. It’s traumatic. It’s serious. But, it also gives us the chance to visit with the excellent Dr. Young and the incomparable Elizabeth Capella, LPN.

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I’ll spare you the thousand words–what you see here is a perfect heart. Or at least as perfect as Charlotte’s mended heart will get. Her bloodflow velocity holds steady at 2.5 (normal is around 1.8; this elevation is to be expected given her conduit). She has no evidence of stenosis or other complications And best of all, while Charlotte was terribly uncomfortable with the idea of a male sonographer, she took a deep breath, focused on the Harry Potter movie and let Mr. Peng take her pictures.

We’re back to annual check ups.

Team Charlotte, gear up for Move for the Kids 2016. So much to celebrate. Charlotte dares you to RUN it with her. Click to join Team Charlotte, or donate if you can’t participate.

MFTK 2015

 


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Flashback #3: The Surgeon Smiles, The Parents Breath (#CHDAware)

I’m sipping tea at the dining room table. Charlotte is upstairs–first day of winter break–doing who knows what. I look at the clock: 9:17 a.m., exactly the time a year ago today Dr. Backer made the first incision in Charlotte’s third open heart surgery. It’s been 365 days. Charlotte hasn’t given it a second thought. Her scars will be neatly hidden beneath warm clothes today, and she’s mostly focused on whether she can convince me to go to a toy store. But, I’m sure I won’t stop thinking about it all day. About how lucky we’ve been in her outcomes so far.

 

I thought I’d share our final update from the surgical waiting room because it begins with the most unlikely of images, a smiling surgeon.

February 11, 2015, Update #4: Dr. Backer stopped by about 30 minutes ago, coffee in hand, imprint from surgical cap still on his forehead, and grin on his face.

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Bubba sits on the gurney outside the surgical suite, keeping guard.

 

Bottom line: Charlotte is out of surgery and he is happy with the results. As he was talking, the surgical team was getting ready to bring Charlotte up to the CCU. We should be able to see her in an hour.

If you don’t need details, you can stop reading there!  If you want more, read on:

The doctor replaced her 16mm Dacron conduit and valve with a 22mm conduit and valve. That means that she has a valve the approximate size of mine. He said that the new valve (her last one was placed in 2007) are made better than the old ones. And it is big enough that there is a good chance that a valve replacement, if needed, might be done via catheter procedure. No one can say for sure that this is her last open heart surgery, but this one went as well as can be expected.

p.s. The new valve is still a “piggy valve,” so kiddo will still be able to snort when she laughs.

Sources:

Children’s Heart Foundation Fact Sheet

American Academy of Pediatrics Congenital Heart Public Health Consortium

 


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Surgeon Looks Happy (#CHDAware)

Update #4: Dr. Backer stopped by about 30 minutes ago, coffee in hand, imprint from surgical cap still on his forehead, and grin on his face.

IMG_1096

Bubba sits on the gurney outside the surgical suite, keeping guard.

 

Bottom line: Charlotte is out of surgery and he is happy with the results. As he was talking, the surgical team was getting ready to bring Charlotte up to the CCU. We should be able to see her in an hour.

If you don’t need details, you can stop reading there!  If you want more, read on:

The doctor replaced her 16mm Dacron conduit and valve with a 22mm conduit and valve. That means that she has a valve the approximate size of mine. He said that the new valve (her last one was placed in 2007) are made better than the old ones. And it is big enough that there is a good chance that a valve replacement, if needed, might be done via catheter procedure. No one can say for sure that this is her last open heart surgery, but this one went as well as can be expected.

p.s. The new valve is still a “piggy valve,” so kiddo will still be able to snort when she laughs.


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On and Off the Heart Bypass Machine (#CHDAware)

Update #3: Charlotte was put on the heart bypass machine and the repair began around 11:20 (CT). The APN just left us with this update–angioplasty has been performed on the RPA (right pulmonary artery) to alleviate the constricted blood flow. The conduit has been replaced to address the stenosis there. Dr. Backer is now performing an echo to check the heart and valve function and then will ease her off the bypass machine and let her heart take over again.  (Or he’ll take her off bypass and then do the echo). At this point, we think that they are leaving the valve–at last check it was competent so there was no need to replace it.

Next, Dr. Backer will “dry” the area and watch. And watch. And watch. Basically, he’ll watch for up to two hours to make sure there is no bleeding and, I think, that the valve truly is  competent now that it has blood flow at full volume and velocity.

So far, thank goodness, it’s been a textbook day, no complications and no arrhythmias.

We’re appreciating all of your texts, calls, emails and FB messages. Please continue to forgive us if we don’t respond super quickly.

It’s Congenital Heart Defect Awareness Week, so I’ll leave you with a few important CGD facts:

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.

You can help. Support CHD research. By supporting CHD research and Lurie Children’s, you’re supporting Charlotte!


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Time for a Major Tune Up

I’ll cut to the punch: Charlotte will need open heart surgery to replace her conduit.

I can hear all of you gasping as you read that.  We, however, did not gasp. I think we would have been more surprised to hear that she needed only angioplasty based two things: (1) Her last repair was just about 8 years ago and back then the anesthesiologist said he thought we’d have 8-10 years on the conduit they put in; and (2) We both remembered Dr. Gossett telling us that he didn’t think he could balloon a second time. So, this time it was a matter of where the blood flow restrictions are.

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ILENE-0255 photos by Lisa Gottschalk

The MRI showed restrictions at the proximal point and through the right pulmonary artery (RPA). Given that the current conduit is only 16mm, she has definitely outgrown it. While they replace the conduit, the surgeons may also do some repairs to the RPA, which they did also in 2007. A larger conduit may allow easier interventions in the case of complications down the road. Moreover, she’ll feel better.

We’re hoping to schedule the surgery for the week of February 9 so that part of the recovery period can happen during our February school break (woo hoo).  We anticipate 5 to 7 days in hospital and another 1 to 2 weeks at home, followed by restricted activity. Followed by some sort of lovely vacation in April.

Before then we’ll have an exercise test (tomorrow) as a baseline. We’ll follow up with a post-surgical exercise test. There will be other pre-op tests as well, I’m sure. Check back here regularly–the blog is about to get busy again.

It’s been a month since Charlotte has been on a horse, and while she’s not riding right now because she’d like to do the repair first, she’s eager to get back in the saddle. Literally.


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Cardio Report

As I began last time the blog returned from a holding pattern to our primary mode of communication about Sprout’s heart, I want to start by conveying our deepest gratitude for the emails and texts you sent after my last update. It is heartwarming (pun, though bad, is intended) to know that you continue to read and check in after nearly 10 years and that you especially tune in to the truly important things.

We had an early morning appointment at Lurie Children’s yesterday morning. As usual, Charlotte had an echocardiogram and an EKG. Liz Cappella, Dr. Young’s amazing nurse practitioner who has cared for Charlotte since our PICU days, came in to take a history. We let Charlotte take the lead answering the questions and describing what she’s been feeling. The bottom line for me is that Charlotte has been feeling things in her chest and her heart that she’s never felt before. While she was matter-of-fact in her explanations, it became clear last night that she was terrified (more on that later; probably in a separate post).

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Charlotte watches “Cloudy With a Chance of Meatballs 2” during the echo. The technician (whose face I have inexpertly hidden per her request) had to keep asking Charlotte to stop laughing. Laughing, apparently, works well for photographs. Not so much for images made from sound!

 

After reading the tests, Dr. Young came in to tell us what she saw: Charlotte’s echo and EKG did indicate that the blood flow velocity through her pulmonary artery is limited and that there might be increasing stenosis. (There is more technical explanation to do with gradients and blood pressure; maybe we can get Dr. Young to post a comment and explain.)

We’ve been here before and we know the drill. This time Dr. Young is recommending more imaging prior to consulting with the cardio team, so we are waiting to schedule an MRI with contrast as well as an exercise test. Once those results are in hand, Dr. Young will conference Charlotte’s case with the whole cardio-thoracic team, including Charlotte’s surgeon, Dr. Backer; Dr. Jeffrey Gossett, the interventionist who performed the last angioplasty; doctors and nurse practitioners from cardio-thoracic surgery, cardiology, and cardiac critical care.

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Before they could get to the consultation, Charlotte and Dr. Young played Spelltower. Doc was quickly addicted and started batting Charlotte’s hand away from the screen. There’s a reason we love our cardiologist.

The bottom line, however, is clear: Charlotte will need an intervention. She will either have angioplasty or a full open-chest repair to replace the Dacron conduit, and probably the valve.

I’ll update more later with a compete download of the blood draw drama as well as Charlotte’s day of terror (from which she learned to put the iPad down and ask questions while mom and dad talk to the doctor).

I want to end on a personal note and congratulate Dr. Luciana Young on her promotion to full professor. If anyone has worked hard to earn that title, it is our friend and hero Luciana.



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11:15 a.m. CST

As of 10:15 a.m., the surgeons had gotten past all of the scar tissue, had administered Heparin, and were getting ready to connect Charlotte to the heart & lung machine. Once that is successfully done, they’ll get working on the two repairs.

She’ll receive a porcine (pig) valve and a Dacron conduit as there is no homograft valve-conduit available today in the correct size. The “parts” they put in are bigger than she needs today so that she can grow into them and hopefully give the repair longevity. We’ve been told that the material of the conduit/valve will not effect its longevity. It’s more a matter of how her body reacts with the pieces.

We expect another update around noon.