Charlotte's Journey Home

Just a Regular Kid, Sort Of


Leave a comment

Flashback #6: Have You Heard Charlotte Tell Her Own Story? (#CHDAware, #TBT)

Without further ado, my post from February 24, 2015:

“Charlotte’s Story: The Road to a Healthy Heart”

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart. Or, read it below:

*Bonus for reading to the end–there’s a video)

February 23, 2015

Charlotte, age 9,underwent her third open-heart surgery at Lurie Children’s just days ago. She shares her story below in honor of American Heart Month.

Hi. My name is Charlotte, and I’ve been a patient at Lurie Children’s since I was 12 hours old. In January 2005, I was diagnosed when my mom was pregnant with me with a congenital heart defect called truncus arteriosus. I was supposed to be born in June, but I arrived a little bit early, on May 9. I’ve been going to Lurie Children’s for follow-ups my whole life. Continue reading


1 Comment

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!

DSCN1216

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


Leave a comment

Flashback #2: Partying through Pre-Op to Mend a Broken Heart (#CHDAware))

Every 6 months I go through the heart momma ritual: I brew a cuppa (today it was tea) and dial the cardiologist’s office to schedule our follow up. And today, that phone call topped my to do list. We have every reason to believe that it will be a routine visit, lots of images, and then a lovely chat with Dr. Young. But…no heart mother (or father) ever stops worrying or ever stops bracing herself for that other kind of appointment. In November 2014, we had that other kind of appointment. We expected it, anticipated it, and were still gobsmacked by it. Still angry at the injustice of our kid having to go through this kind of heartache, literally.

Today’s flashback will take you to February 9, 2015 the day before her scheduled surgery.

It includes a tribute to the children who made it clear that their hearts would hold Charlotte’s while she underwent surgery and recovered. I am grateful to them and their teacher every day. (Fair warning: I cried AGAIN when I watched the video.

February 10, 2015: Pre-Op The lead up to the pre-op appointment started in the most wonderful way. Charlotte’s classmates threw her a surprise party. While she was, I think, most thrilled with the gifts (especially an Equestria and Monster High Dolls), we were touched by the fact that the party was the idea of two of Charlotte’s classmates and the joy of the rest of them. The children put their hearts and souls into letting Charlotte know that they would miss her, that they will be thinking about her, and that she has an incredible network of support.

We spent the weekend playing with friends and generally not thinking about what was on deck for this week.

We also began a mindfulness practice late last week to practice breathing through fears, especially fears of needles.

This morning my friend Jeanne came to work with Charlotte, using an energy technique called EFT Tapping. Charlotte did as good a job as she could working with Jeanne, though she did lose focus once she realized that there were still crepes in the refrigerator. She did seem relaxed and ready for anything when we left the house.

Now, Jeanne and I realized that one tapping session and a few meditation sessions might not help her enough. But, Charlotte was willing and it was worth a try.

FullSizeRender-5

I got a smile from her when I told her that Bubba was looking down from atop her head and smiling. I had to take this photo to prove it!

I wish I could say it worked miraculously. Sadly, no. Charlotte began to fall apart when it was time to change in to a hospital gown for the lung x-ray. The little tigers seemed babyish to her. Then the x-ray technician called her “sweetie” and told her she couldn’t hold Bubba during the x-ray. Charlotte’s dark side started seeping out. She was muttering, crying, on the verge of a meltdown. I snuck Bubba under her thumb and we got out of there as unscathed as possible.

She calmed down and seemed to set her mind to getting through the blood draw. Until we entered the room. I’ll spare you the details, you can get the general idea from the last time we did this. Truthfully, I’m sparing me the details. I don’t have the heart to write about this again. Bottom line–this time was a bit worse. We were better prepared; instead of a phlebotomist, we had a member of the IV team to do the draw. We called Child Life to distract. And still, Charlotte just couldn’t concentrate on hertools.We tried breathing. She didn’t want to tap, so I tried another technique Jeanne taught me, squeezing Charlotte’s finger tips while quietly talking to her. Eventually she said, “Mom, stop squeezing my fingers.” Sigh.

Eventually (maybe 40 minutes later?) the IV team member had to go to the ICU so she called cardiology and we went down to see the APN (advanced practice nurse) for our pre-op conversation. The nurse and Dr. Backer spoke while we went down and they decidedFullSizeRender-4that they could get the blood once Charlotte is under anesthesia tomorrow. It’s not ideal–it will add time to the procedure and the time that Charlotte is under anesthesia, but since they couldn’t sedate her today, it was the best we could do.

Maria, the APN, explained the procedure and risks and we asked a few questions. Then it was time to get lunch and head to Art for the Heart.

We got Charlotte to bed around 9:30 after a bath, watching Mirror Mirror and swabbing her whole body with special antibacterial wipes.

We are expected at the hospital at 6 a.m. tomorrow. We’ll keep you posted periodically. If we don’t answer your texts or phone calls quickly, please don’t take it personally.

 

 


Leave a comment

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.

IMG_5847

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!


Leave a comment

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).

IMG_0712

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.)

IMG_0711

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.

DSCN1393

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.)


Leave a comment

Charlotte’s Story: The Road to a Healthy Heart

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart.


Leave a comment

A Day In the Life of Cardiac Surgery Recovery

IMG_0698

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

IMG_0699

Qwirkle

IMG_0700

Mom’s Remedy

IMG_0701

More Quirkle

IMG_0705

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.