Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Flashback #4: What does awesome mean to you? (#CHDAware)

A year ago, Charlotte declared her status to be “Awesome as usual.” Today, 370 days after her third open heart surgery, I can attest that awesome IS usual for her. And by “awesome” I mean causing feelings related to the “dread, veneration, and wonder that is inspired by authority or by the sacred or sublime,” as defined by Merriam-Wesbster. I am awed, truly, by modern medicine. When I think that had I been born with truncus arteriosis type I, I likely would not be writing this blog post, I can’t help but feel veneration for the scientists who dared to dream that they could fix a broken heart. If those surgeons want to think they are gods, well, probably they are at the very least, godlike.

Now for the Flashback: 2/15/2015: Current status: Charlotte says that her current status is “Awesome as usual.” Clearly, her ego has recovered 🙂 She’s weaning herself from all things “i” and spent the morning on a craft project sent by a most excellent pair of twin 10-year olds. They also sent stuffed versions of what Charlotte misses most from home.With Ty Fred and Ginger

 

Medical update: The writing of this blog post was interrupted for…the removal of the chest tubes! Charlotte was a bit anxious about it so we medicated her. The Versed kicked in right after the tubes came out so she is blissfully listening to Taylor Swift right now and telling me how good her lemonade is.

After chest tubes were removed, Charlotte had an x-ray. She needs an echo. With normal results on those two things her central line should come out tomorrow and then we get to go home!

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Let me check out my lung x-ray. I can see the wire around the conduit. Cool. (Umm….no comments about my bed head, please!)

In the meantime, she’s been taking bigger and bigger walks. One big goal was to visit the Founder’s Board Treehouse on the 12th floor.DSCN1220

 

Mission accomplished! Lindsay, the APN on duty today, believes Charlotte won’t remember this visit or photo, so we’ll go again later.

We’re down to Lasix once a day, baby aspirin, pain meds as needed and Miralax. While she will go home with a few meds, nothing is long term.

On a sad note, Bubba’s nose is falling off. We’ve had to call in reinforcements. Introducing “the spare bear.”

DSCN1215Today’s cheery update brought to you by the “Flock of Docs.” That’s Dr. Backer all the way to the left. He’s pretty happy about today’s news!

Flock of Docs

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Goodbye 2015, Hello Leap Year

I realized tonight that we never did our annual New Year’s post for 2015. Probably because we were in the thick of “countdown to surgery.”

So, let me be the first in my family to wish you a happy and healthy 2016. We will not be sad to put parts of 2015 behind us. But, in truth, we couldn’t have asked for a better year. Yes, Charlotte had her third open-heart surgery. And, yes, it was the first surgery she was old enough to be scared of and the first new scar she was aware enough to be self-conscious about. And yet…she crushed it, as they say. She came through with a smile (after the dilaudid wore off).

And once past it, Charlotte learned to ride a bike; traveled to Washington, D.C., Mexico, Cape Cod, Belgium, Amsterdam, New York and New Jersey; had her first sleepover party; and made me laugh harder than you can imagine. We’re proud of the incredible strength she showed during the first part of the year and hope she’ll realize one day what a warrior she is.

As a Truncus Arteriosus type I patient, we have learned, Charlotte continues to experience best-case scenario outcomes. She has had no emergent issues and suffers no contingent developmental delays (we just learned this year that we probably should have been prepared for severe learning and developmental difficulties). With that in mind, I have one thing to say as 2015 fades into memory: Thank you.

Thank you Dr. Backer and your extraordinary surgical team. Charlotte with Dr. Backer Thank you Dr. Luciana Young, for your friendship and amazing care of our daughter. Thank you Elizabeth Capella, for teaching Charlotte’s friends about her condition to make post-surgery school easier.
C and Doc YoungC and Liz

 

 

 

 

 

 

 

 

Thank you to Lurie Children’s Hospital and the Regenstein Cardiac Care Unit.Flock of DocsThank you to Charlotte’s incomparable teacher Alexandra Mignet and her 4th grade class for throwing Charlotte a party and Skyping with her while she was out. DSCN1235Thank you to Philippe and Team Charlotte for running the Move for the Kids 5K with Charlotte in celebration of Charlotte’s recovery and in support of “Charlotte’s Hospital.”

Team Charlote MFTK

And thank you to each and every one of you who never ever treat her like anything other than a regular kid. All things considered, 2015 was a good year.

Charlotte’s Journey Home began as a way to keep our family and friends informed throughout my pregnancy and in the first critical weeks and months of Charlotte’s life. Little did I dream that it would be a 10+ year endeavor. Nor did we realize that we would touch the lives of other parents of CHD children or of kids with severe reflux. Or find an adult role model for Charlotte, another Truncus Arteriosus patient (Jessica, that’s you). Or be befriended by a tour-de-force crusader for CHD research (Francie, you know who you are). It’s been a pretty good 10 year run.

As we head into the next phase of Charlotte’s life, she wants more privacy about her growth and life changes. And as there aren’t that many medical updates these days, it seems a good time to put Charlotte’s Journey Home on hiatus. We’ll be back when there’s a heart or medical update of import, or when we want your support for our endeavors on behalf of Lurie Children’s, or when we just are so proud we need to kvell loudly.

Until then, dear reader and Team Charlotte, one last THANK YOU for all the support you’ve offered our family for the past decade.

Three in Mexico

 


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The Unstressed Stress Test

Charlotte went for her post-surgery exercise stress test yesterday. If you recall, she had a baseline test in January. For the details of the visit itself, check out that blog post–I was pretty specific about the machines, the hook-ups, etc. and how it all worked.

In January she was only able to move (a slow, steep walk into a steeper run) for about 7 minutes. She had to stop because she began to have pain in her chest, or in her heart as she put it.  Her lung capacity was 71%, lower than the average 80% for kids her age.

Yesterday she continued on to 10 minutes. She only stopped because the tube she had to breathe into was terribly uncomfortable–she was drooling around it, but her mouth was dry–and the knee she skinned on a carpet was really bugging her.

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Unlike the test in January, the cardiologist in the room did not give us the full detail of lung function, etc. He just said that everything looked good and that he wasn’t worried about anything. We’ll expect a more full report from Dr. Young when she has a chance to read the EKG and other data.

We weren’t terribly surprised by what we did hear, though we loved hearing it. Charlotte is training for the Girls on the Run 5K which she and I will run on November 21. She regularly is asked to run for as long as she can in gym and usually gets to at least 12 minutes. She tells me that is longer than some of her other classmates.

She was thrilled to go to school for a half day on her half birthday! I was thrilled that all is as it should be: Her heart surgery in February is a memory, the scar is fading to white (finally), and our daughter is again thriving and keeping up with her friends.  A good day.


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Back to School, But Not Quite Back to Normal

Have you ever seen a conquering queen returned to her castle? It must look something like Charlotte’s reception at school yesterday. As soon as her classmates saw her turn the corner at the top of the stairs, several girls came running toward her to envelope her in hugs. As we approached the classroom, the crowd parted to let her pass. Her classmates peppered her with questions and other fourth graders stared and smiled. My heart swelled. It nearly burst when her teacher jumped out of her chair to give Charlotte a hug.  She was thrilled to be back at school, and school was clearly happy to have her back.

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Charlotte hard at work on a craft project dropped of by a friend of mine. She has been so spoiled for the past 4 weeks. Thank you, everyone.

Charlotte can’t carry her backpack for another month. I don’t know if you’ve carried a fourth grade backpack recently, but Charlotte’s must weigh 15+ pounds. It triggered the seatbelt alarm in my car this morning.  So, I walk her upstairs every day. In an effort not to disrupt class too much, I’ve asked for her to have help bringing it to the office. Her desk mates and dear friends Taylor and Annamaria have been helping, with big smiles on their faces. I suspect that will grow old eventually, but I so appreciate their support of our kiddo.

The APN suggested that Charlotte start back to school half days for a week or two. I picked her up at 11:30 a.m. and she was happy to see me, yawning all the way home. She didn’t nap, but she was definitely exhausted.

Same drill today. She wasn’t as tired when I picked her up, but our 1.5 hour wait at the pediatrician (for a post-surgery follow up) took the rest of her energy and she was in bed, fast asleep, by 7:32.

Still, she’s on her way back to her regular routine. And she couldn’t be happier about it.

Pediatrician appointment was truly unremarkable, except that Charlotte is now 59.75 inches tall. Look out, Jamie!


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Post-Surgery Appointment (#CHDAware), or One More Step Back Toward Regular

It’s hard to believe that Charlotte has been home for nearly a week and that her surgery was two weeks ago. As long as the hospital stay felt at the time, it has faded into memory in some ways. (Though it was odd to go back to the 15th floor for a Children’s Service Board meeting last week, two days after she was released.)

We returned to Lurie Children’s on Tuesday for Charlotte’s post-surgical visit with the Advance Practice Nurse (APN), the most excellent Holly Adams (with a guest visit by Lindsay Jackson).

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In addition to removing her own bandages, Charlotte listened to her own heart. She says it sounds different than it did. The thump-swoosh rhythm seems stronger and faster. (Mom forgot her camera and the phone didn’t so well with hospital lighting.)

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I’m pleased to say that there is nothing of importance to report!  Charlotte is only on one prescription medication, Lasix. That dose was reduced by 50%, to be continued until we see Dr. Young in March. She continues to take Miralax and baby aspirin, the latter until we see Dr. Young and the former until at least our visit with the pediatrician next week.

Charlotte had already removed all the tegaderm bandages (on the arterial line, one failed PIV poke, and–yuckiest of all for her–the chest tube wounds). All that remained were the surgistrips over the wound.

Holly and I watched as Charlotte took the bandages off herself, slowly and deliberately and with strong intention. Unlike 2007, I did not take a photo of this scar for public sharing. It looks a lot better than it did at her first post-op visit in 2007.

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First post op visit March 2007. Skin still irritated from tegaderm around IV points and scar is dark pink. In February 2015, tegaderm irritation is all gone and scar is already light pink

 

Bottom line: Charlotte has been released from cardio-vascular surgical care. Her next hospital visit will be with Dr. Young. Her next post-op visit will be with her pediatrician.

She has been cleared to return to school on Monday with the recommendation that she do half days until we understand how tired she gets. (We’ve been hoping to build her stamina with walks, but the weather has not been cooperating.)


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A Day In the Life of Cardiac Surgery Recovery

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Why homeschooling at our house will never be a long term commitment.

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Qwirkle

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Mom’s Remedy

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More Quirkle

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More trash talking, I mean, more Qwirkle.

In all seriousness, Charlotte has been handling her confinement with aplomb. She’s been trying to get her schoolwork done without too much complaining, playing board games, reading, and practicing the piano a lot (it’s good for her post-surgery posture recovery!). And pretty much every night at 7:36 she says, “I need to go to bed. Now.” Then she sleeps for about 12 hours.

We finally went for a walk around the block yesterday–had to wait until the below-zero temperatures subsided. She also had a visit from a school friend yesterday. Today, another school friend visit plus a haircut (with a one block walk to/from the car) led to Charlotte abandoning a game of Qwirkle midway through for a nap. Charlotte never naps. It’s kind of against all of her principles (silly girl). But today, she passed out for about two hours, waking up only because Phil tempted her with wonton soup and we let her watch some of the Oscars (well, we let her sit in front of the t.v. and play video games on her iPod).

She’s running a  low-grade fever today–the first we’ve noticed. It’s only 99.1F so, we’re not too worried, but we’ll keep an eye on it.

She’s gotten all of her bandages off, except the surgistrips on the big incision, which the APN will take off on Tuesday.


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Home Sweet Home

It is amazing what a difference being at home and sleeping in her own bed makes. Charlotte has had two nights of uninterrupted sleep, 12 hours a night. She’s eating well and all systems are working properly, if you know what I mean.

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Taken with my phone, so not as sharp as it should be. Charlotte demonstrates the power of dry shampoo.

 

We have to be careful about keeping the surgistrips on her incision dry, but she was able to take a bath (with about 5 inches of water) on Tuesday night and has pulled off the big sticker that velcroed wires to her leg during surgery. She still has some bandages over her chest tube and central line sites. Her goal is to get those off by her APN visit next week.

Generally, she seems to be in no pain, just occasional discomfort. Her posture is hunched, crooked and concave. I’m hoping that improves quickly. To that end, I am encouraging lots of piano playing as she sits beautifully on the piano bench. As soon as the tundra-like weather lets up a little, we’re going to get out and walk every day. In the meantime, homework, piano, boardgames (with a lot of trash talk. Who is this kid?), movies, and lots of reading. She’s happy as a clam, and not too bored yet!

Happy Year of the Goat!