Charlotte's Journey Home

Just a Regular Kid, Sort Of


1 Comment

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).

Echo_111314

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.

IMG_0498

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.



1 Comment

Charlotte Speaks Up — A Heart Update

We’ve always told Charlotte that she will eventually be able to read her body and tell us when it has time to go to the doctor. We just never thought it would happen before she hit adolescence. But, Charlotte has been a self-aware and observant child from the beginning, so I guess we should have been prepared.

C on stage GCFAS

A week or so ago, Charlotte told me that she had had chest pains after running hard during a game of tag. I asked if it felt like her usual chest pains* (typically caused by reflux). She said no. She mentioned it again the next day and I asked if she was concerned. She said, “Not concerned. Worried.”In the past month, she  has reported being tired after thirty minutes of horseback riding (at her level it is seriously not that strenuous a sport) and slept for 13 hours the first night of her October vacation.  I have no doubt something is going on. So, I shot an email to her cardiologist and we’ll be going in for her check up next week–5 months earlier than anticipated. Needless to say, Philippe and I are now worried, too.

Charlotte’s last intervention was a cardiac catheterization and balloon procedure in October 2012. Drs. Gossett and Young  both told us that while the procedure was incredibly successful, it might buy us a few years (or 2 to 3 years, depending on who remembers the conversation) until we’d need to talk about surgery, or some other intervention. We’re just past 2 years on that intervention.

To put this in perspective–which I am desperately trying to do–Charlotte’s last repair was in March 2007. She was 20 months old. She bounced back after surgery beautifully and grew 4 inches almost overnight. It was evident how necessary the surgery was when we saw her renewed energy and sudden growth, not to mention her quick weaning from the g-tube.  The anesthesiologist at the time told us he’d never seen a conduit that large put in a small child and that he was sure the repair could last for a long, long time. Even close to 10 years. Well, we’re close to 8 years on that repair.

We don’t know what we’re in for, other than the roller coaster ride of remembering that our jewel is a heart patient and always will be. It’s not all she is, not by a long shot. But her heart, both literally and metaphorically, defines our family in so many ways. Sometimes, like this week, it defines our focus. Sometimes, like in the photo of Charlotte on stage at the Gold Coast Fashion Award Show in September, it defines our philanthropic bent.  That’s the literal heart, of course. As I work to keep things in perspective, I’m reminded that her metaphorical heart truly defines us by reminding us that there is wonder in the world, compassion in great droves when you least expect it, and laughter to help heal all things.

Please keep Charlotte in your thoughts this week.