Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Chicago Dance Marathon

For years I’ve been aware of the Northwestern University Dance Marathon, mostly when my students ask for extensions on assignments because they will be dancing. (I can’t say no; they’re doing philanthropic work and you know how I feel about that!) This year, my niece solicited my support of her involvement with the self-proclaimed biggest of all collegiate Dance Marathon’s, the one and only Penn State ‘Thon. But, I never thought I’d get involved in one.
And then we got an email from Children’s Memorial Foundation asking us to tell Charlotte’s story to a roomful of dancers at the first-ever post-collegiate, off-campus Dance Marathon.
The Chicago Dance Marathon was a direct outgrowth of collegiate dance marathons. Its boardmembers come from Big 10 schools. From what I can tell, they were so moved by the good done by their collegiate dance marathons that they wanted to continue the good work. They are affiliated with the Children’s Miracle Network, and through that have chosen Children’s Memorial Hospital as their beneficiary.
The dancers began their 13.1 hours at 8 a.m. on Saturday, March 6. We arrived at the McCormick Place Hyatt around 3:30 and were delighted by set up for participating families–there was a room filled with snacks and craft supplies, volunteers to help us, and a ballroom filled with enthusiastic dancers and the children they were helping.

No idea who was “Shaking for Charlotte,” but I thought it was wonderful that there was a poster for every child whose story was told. (Of course, there may have been a team dancing for another Charlotte, but I like to think she’s the only Charlotte.)

At 4:20 we took the stage. My knees were knocking as I read the (very) abbreviated version of Charlotte’s story that we shared. I fought back the tears as I spoke of her surgeries and Children’s incredible nursing care. Philippe did a great job ad-libbing off my too-prepared schpiel. I think Charlotte was just delighted to see her baby pictures on display!

Charlotte’s friend Trudy brought her parents to cheer us on (Thanks, Bruce, for the photos). Her mom realized that she didn’t think of Charlotte as anything but a regular kid and playmate when Trudy started asking questions about “what’s that in Charlotte’s mouth?” (the breathing tube). The girls enjoyed another hour of dancing, playing, and painting before we took them home for pizza and cupcakes.

The unofficial tally: The first-ever Chicago Dance Marathon for Children’s raised nearly $250,000! The organization thinks this may be a record for an inaugural event.


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Cardiac Follow Up: Lung Perfusion Exam

Back in August, 2009 Charlotte went for her periodic check up with her cardiologist Dr. Young. At the time, Dr. Young was unable to get a clear picture of Charlotte’s right pulmonary artery. Since this is the arterial trunk that had constriction leading to her second surgery and had a special surgical procedure done to add elasticity to it (my word,s, not the medical terminology), she asked us to schedule Charlotte for a lung perfusion test. Between school schedules and the hospital’s schedule, we were finally able to get it done last week. (Clearly it was not urgent, though very important.)
What is a lung perfusion test? The machine looks something like an MRI. The patient has a dye injected into their blood that allows the camera to “see” the blood as it flows through the veins. For Dr. Young this replicates by camera what the Doeppler does via soundwaves, with the added bonus of guaranteeing that she can see everything she needs to. The test takes about 45 minutes, during which time the patient needs to lie still. The 4 3/4 year old patient!

Charlotte and I arrived at 9:00 a.m. Friday morning. In one of our best-ever experiences with the Radiology Department waiting room, we were called back to the Nuclear Medicine imaging room within about 10 minutes.

Our technician Steph explained the procedure to Charlotte. She and Charlotte had Bubba check out the machine first. Bubba had to be reassured, Steph told Charlotte, because he might be scared. Only Charlotte could make him brave.

The trickiest part is numbing the hand or arm for the IV and then inserting the needle. That’s the only “owie” and the part that scares Charlotte. She had two major concerns, “Please no bandaids” and “When can I watch my movie?”

To ease Charlotte and me through the IV procedure, Steph had Emily from the Child Life Department walk us through the numbing and needle. She brought an “IV teaching kit” and demonstrated what would happen. Then she sat with us the whole time.

Our biggest trauma was that Charlotte’s vein didn’t like the “popper,” an air delivery system of Lidicaine which forces the medicine through the skin with a strong blow of air. After the “popper” the IV went in easily but there was blood in the draw back. What does that mean? When Steph pulled the needle back to check the IV placement, blood came back. For Charlotte it meant that we had to pull the first IV out and start again. She screamed, and rightly so. I blinked back tears. We both blew bubbles and watched Emily to avoid the needle.

Charlotte earned a bravery certificate:

I earned a few more gray hairs!

After Steph pushed the dye through the IV, she pulled the IV and Charlotte settled onto the table for the part she came for: watching 101 Dalmations (Betcha thought I was going to say Mary Poppins!).

Charlotte’s point of view during the test. She was actually irritated when the test was over because she hadn’t gotten to watch the movie to the end. (And she was hungry.)

There have been some incredible process improvement since Charlotte’s last lung perfusion test June, 2006). To begin with, Nuclear Medicine has a new, beautiful room within the radiology suite. It is bright, cheerful yellow; that in itself is a major improvement over the putty gray from last time. Even better, the machine is new. Rather than the donut that Charlotte had to be slid into, the new machine features two large rectangular cameras that angle around the patient, leaving lots of open space. To get the 360 degree view, these big rectangular cameras are rotated 60 degrees every 5 minutes. In one view, Charlotte is completely visible and not penned in at all. (I’m trying to find the last post and photos of the lung perfusion; stay tuned for an update to this post with a link.)Finally, and hands down Charlotte’s favorite part, the screen the technician uses for positioning and checking the medicine doubles as a video monitor.

Charlotte did tell me over lunch that she “didn’t want to do that again soon.” Who can blame her, really? But she was, as always, braver than brave.

My hat off to Steph, Emily and the digital imaging student. They made this a truly painless, happy 90 minutes or so.