Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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

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Do You Know the Correlation Between CHD and Brain Injuries? (#CHDAware)

While Charlotte was in hospital last February, one of her PICU nurses, Carrie Alden, from 2005 stopped by. Carrie had recently returned to Lurie Children’s cardiology department from an outside position and when she saw Charlotte’s name on the CCU in-patient list she had to stop by. Of course she wanted to see her favorite patient, but she also wanted us to meet Dr. Bradley Marino, a pioneer in the subfield of cardiac neurodevelopmental outcomes.

He was clearly surprised and delighted that Charlotte attends, and excels at, a bilingual school. Chills ran down my spine when he explained: It seems that children with CHD suffer “neurodevelopmental and psychosocial impairments due to brain injuries related to their congenital heart defects.” These brain injuries don’t come from catastrophic incidents (this is not an episode of Code Black, it’s a “mommy blog”); they come from low oxygen levels and poor brain blood flow, as well as issues related to medical and surgical treatments.

Charlotte’s oxygen levels have always been above 90%, usually above 95% and most typically between 96-98%. We knew this was good because the nurses and doctors were always happy about it. And since they were happy, we never thought to ask why they were happy or what the problem with a low sat level might be.

Here’s what we didn’t know:

75 percent of these patients are at risk for language impairment, Attention Deficit Hyperactivity Disorder, executive dysfunction, visual processing issues, fine and gross motor problems and behavioral and emotional difficulties. More than 30 percent of these children require remedial services in school including tutoring, special education, and physical, occupational and speech therapies.

Sometimes ignorance really is bliss, I guess. Had I known, I would have worried. Instead, we followed the advice of a friend who had a friend with super-premies and had Charlotte assessed when she was 7 or 8 weeks old, immediately getting her into PT and feeding therapy. We panicked when a teacher (incorrectly) thought Charlotte had developmental or behavioral issues and sought a full battery of neuropsych, OT and developmental assessments. And then we followed the advice of the neuropsychologist and had her assessed again in third grade.

Turns out she has minor visual processing issues (that she seems to be outgrowing) and some fine motor challenges.

If Charlotte had had serious problems, we’d have been on top of them. But not because our cardiologist (who we adore), our surgeon (ditto), or any medical staff (again, ditto), suggested we do these tests and interventions. Because we followed the advice of another mom (it was well-reasoned and cost me nothing to follow), and the intuition (if flawed) of a master teacher.

That said, I’m am beyond grateful to the universe from sparing Charlotte further challenges related to her broken heart. And I’m beyond thrilled that Dr. Marino is heading the new (as of 2015) Neo-Heart Developmental Support Program at Ann & Robert H. Lurie Children’s Hospital of Chicago. I urge you to read about his great work, and a lovely patient he has helped, here. (All the quotes in this post come from this article.)

No CHD parent can say it enough: As more and more of our children live longer lives (my cousin is in her 50s), we need to make sure that they lead the fullest lives possible. The answer, as always, is research and outreach.

We are #CHDAware.


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Flashback #5: Bringing Her Home (#CHDAware)

Sometimes the words of a song are just the words of a song. A beautiful haunting lyric that draws you back over and over, but still just a song. Then, sometimes the same song hits you differently. Tonight, listening to Alfie Boe sing “Bring Him Home,” I felt the song as only a parent can. And as I felt the song, Charlotte laced her fingers through mine and whispered, “Chills.” Jean Valjean prays to God to bring Marius home, to let him live. Truly, those are the only thoughts that go through a parents mind when their child in on the operating table. Any operating table. I don’t care if the general anesthesia is for ear tubes, a tonsillectomy, a heart surgery or a lung transplant. When the doctors wheel your baby away, and you have no control….that’s the sentiment, the lament, the prayer.

And when they say to you, “Okay, you can take her home today,” you cry precious tears of relief. And realize how very lucky you are to hear those words, and no other words.

Last February 17 we heard those words. Yesterday, we were too busy jamming to Gloria & Emilio Estefan’s excellent and joyous On Your Feet to even think about it. Chills indeed.

So, for “throwback Thursday,” I give you Flashback #5: February 17, 2015:

Current StatusSitting in the living room playing Katamino waiting for sushi to be delivered.

Medical UpdateSitting in the living room playing Katamino waiting for sushi to be delivered.

But seriously, Charlotte was discharged around 2:30 today. The day consisted of removing the central line, which was a bit difficult but not nearly as traumatic and traumatizing as any other removal has been. In between crying that she couldn’t do it, Charlotte breathed (deep breath in, breath out “sushi”), and  giggled at Despicable Me 2. Once the central line was removed, she had to lie flat-ish for about 30 minutes. Then we went downstairs for a chest x-ray.

After the chest x-ray, we waited for the prescription delivery and to get the last peripheral IV out.  That last thing is what took the longest, and what made me the most proud.

Charlotte hates having things put in or taken out (can you blame her?) and she also dislikes having medical teams hover around her.

So, she insisted on taking the PIV out herself. Her excellent RN, Katie, sat on one side of the bed, Phil an I on the other. While Katie walked us through the discharge instructions, Charlotte worked on the tegaderm surrounding the IV. She worked and worked, listening to some Katy Perry and Taylor Swift. She vacillated between “I can’t do this” and “I’ve got this.”  The last little bit was really difficult. Both Katie and then Holly, the APN on duty, helped Charlotte strategize how to approach the tape.

Finally, she got all worked up, “I can’t do this. I’m never going to be able to do this.” Then silence, then “Oh, it’s out.”

She did. The sushi is here. Have a good night, ya’ll.

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Charlotte heads home wearing sweat pants and fancy boots. Best combination ever. (Caption credit: Charlotte)

 

 

 


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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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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.

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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.

 

 


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Flashback #1: 18 Hours Before Surgery She Played a Steinway (#CHDAware)

I’ve just kissed Charlotte good night after finishing the very excellent The View From Saturday by E.L. Konigsburg. As we snuggled and talked about her upcoming school break, I couldn’t help but think how different February 9, 2016 is from February 9, 2015. Since this is CHD Awareness Week, and we are oh, so aware, I thought I’d repost last year’s heart updates, starting with the eve of the anticipated surgery.

In case you don’t remember, or are just tuning in, Charlotte was originally scheduled for open heart surgery on February 10, 2016. We had our pre-op appointments that day. And, then Charlotte did something amazing, she played piano to benefit Saving tiny Hearts Society.

Read all about February 9, 2015 and be #CHDAware.

Charlotte’s scars have nearly faded back to the silky white of February 2015, and she seems less self-conscious of them. But she stills feels different. Sometimes special. Always grateful.

 


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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.)