All Done (Almost) plus Heart News

Tonight at dinner Charlotte drank more formula (Pediasure) than she has ever drunk in her entire little life! She topped off at 190 mls. If you recall, before she went “on strike” on 12/20/2005, the most she’d taken in was 180 mls. Earlier this week, she took 165 ml. for breakfast. So, twice this week she has taken nearly 50% orally of the food we attempt to feed her by mouth (we’re not counting the 300 mls. we pump while she sleeps). She’s also taking her solid food more willingly, though only 3-4 spoonfuls per meal. It’s a start and we’re kind of giddy.

On the heart front, we had this news from Dr. Young today:

“The perfusion scan shows no significant change in comparison to the last study,
which I believe was in February. The echo shows moderate narrowing across her
pulmonary outflow, at the conduit and branch pulmonary arteries with otherwise
good biventricular function.”

What does this mean? Dr. Young is going to consult with Dr. Pophal, the interventionist cardiologist, to determine appropriate timing for a catheter procedure.

We did the last cath in August. Dr. Pophal told us at that time that we might be looking at “serial caths” prior to the next open-heart surgery, so we’re not surprised by today’s news. Actually, I’m surprised that the last cath bought us 10 whole months.

Meanwhile, Charlotte has no idea that she’s not just a regular kid. She squeals and plays in the playground and Gymboree, completely unaware that I’m chasing her with her Zevex pump backpack (she can’t quite wear it yet). She stood independently several times in the past two days. And she’s quite the chatterbox! We’re not looking forward to another anesthetized procedure, but if it can stave off surgery and help her continue to grow and develop, then so it will be.

I attended a meeting of the Children’s Service Board of Children’s Memorial Hospital today. For all of you local folks, please save October 5 for our Gold Coast Annual Fashion Show. It’s one of *the* fundraising events of the Chicago “season” and it’s shaping up to be great. Also, tomorrow (June 22) is Chicago Sun-Times Kids’ Day—look for volunteers selling special editions of the paper to raise money for the hospital. All of the CMH boards are focused on raising money to build our new hospital and your support, if you can lend it, will serve generations of Chicagoland kids.

1 thought on “All Done (Almost) plus Heart News

  1. Wow, Charlotte I guess that’s what Mommy was saying on the phone last night. There was a buzz that sounded like major static, so I couldn’t hear all of it. I’m sooo happy for all of you. Love and kisses, can’t wait for next week. Bamma

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