Charlotte's Journey Home

Just a Regular Kid, Sort Of


Leave a comment

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

 

Advertisements


Leave a comment

Move for the Kids or At Least Move For Charlotte! Walk with us….

signature-tile

Today is May 6.

Just 3 days before Charlotte’s 9th birthday.

Just 10 days before the 9th anniversary of her life-saving heart surgery.

And just 13 days before Move for the Kids, the 5k celebrating and supporting the Ann & Robert H. Lurie Children’s Hospital of Chicago.

Walk with us! If you can’t walk consider a donation–your money will be well-invested:

  • $35: Provides parents a pull-out couch so they can remain by their child’s side.
  • $60: Supports the more than 600,000 patient visits each year.
  • $120: Helps cover the cost for one pediatric oncology trial for one year.
  • $240: Assists Lurie Children’s patient families with day-to-day necessities.
  • $450: Provides essential items for one infant to ensure a calming and comfortable stay in the NICU.

To join or support Team Charlotte, click here or on the image below:

signature-tile


Leave a comment

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.

DSCN0309

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!


1 Comment

Measuring Up, or Heart by the Numbers

We measure Charlotte in many of the same units that most parents measure their kids–inches and pounds (or centimeters and kilograms). We measure her life, as most parents do, in units of years, whether her own years or school years.

As of August we now also measure her in terms of percent of spinal curvature as we track her juvenile idiopathic scoliosis.

Mostly, though, we hold our breath for the one to two times a year when we measure her by the opening of her pulmonary conduit and the velocity of her blood flow. These are the measurements that remind us that Charlotte will be a heart patient for the rest of her life. These are the measures for which we hold our breath and after which, most of the time, we give a deep sigh of relief and then have lengthy, nervous conversation with Charlotte’s cardiologist. How many parents worry about their child’s blood flow velocity or medial measurements? More than I’d like to think about, I’m sure. But it still gives me pause each time we visit the incomparable Dr. Luciana Young. These are the measures that have led me to measure my life by our contributions to Lurie Children’s Hospital (more about that later!).

That time of year came again last week.

Lurie Children's Hospital Photo Op Spot-(9/26/2013)

Lurie Children’s Hospital Photo Op Spot(9/26/2013)

The good news is that Charlotte’s measurements have not changed since her February checkup. The sobering news is that her measurements, specifically the diameter of her conduit, are good, but not as good as Dr. Young would like to see them.  The cardiac catheterization last October did a great job, quadrupling the size of the opening. However, she continues to have stenosis in the conduit.  We’re hopeful that her numbers will remain stable for a while. (I didn’t write down the actual numbers. If you’re dying of curiosity, I’m sure we can get them.)

If not, we’ll talk to Dr. Gossett and pray that another catheterization or even a stent procedure can buy us time until the next repair.  Truly, eight years old is proving to be an emotionally delicate age and I worry that the need for further medical intervention could be quite traumatic for Charlotte. So, these will be the numbers for which I’ll hold my breath in February and pray that we’ll have bought another year–another year of growth and another year of maturity and understanding.

For now, we watch and wait. Next check up in 6 months.

Meanwhile, for the truly astounding numbers: Charlotte has grown 2 inches since July! She measures in at an astounding 4’7”. She’s no longer the very tallest in her class, but her height continues to stun me.


Leave a comment

Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

Just a reminder–it’s not too late to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

So far our team has raised $636. With matching funds we’ll be at $966. Our team goal is $1000. Won’t you help us meet or beat it?

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!


1 Comment

Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

I’ll be updating the blog this weekend; nothing major going on, just regular kids stuff like eye doctor visits and strep tests.

In the meantime, I want to invite you to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!