Charlotte had her cardiology check up today. We’ve been a bit concerned because she sleeps a little bit more than an average toddler her age (14 hours/day to the average 13/hours a day). But, we weren’t too worried because she has no other symptoms—she doesn’t fatigue quickly, her color is good, and she keeps up with the other kids on the playground.
Today, Charlotte actually sat still—sort of—for her echocardiogram (ultrasound of the heart). She fidgeted a bit, but I curled up on the table around her, held her hands away from the ultrasound wand, and kept reminding her to watch Dora. Dora the Explorer, if you’re not familiar, is a lovely bilingual cartoon character who goes on adventures with her pet monkey (?) Boots. Charlotte doesn’t watch much television, but at the hospital we always watch Dora.
She started to scream during her ECG. This procedure takes all of 5 seconds. However, attaching the very sticky black stickers all over her chest, legs and arms is challenging. And removing them can be painful. Think duct tape. Anyway, Nurse Extraordinaire Toni kept Miss Charlotte entertained with some superior bubble blowing while Brenda and I got the stickers off.
Once Dr. Young had read all the reports, we met with her. Here’s the upshot:
Charlotte’s gradients (percentage of blood flow going left and right) have shifted again, with less and less blood going to her right lung. We expected this as it has happened at the past three exams.
Since it continues to devolve, we’re going to schedule a balloon angioplasty in the next month. Basically, Dr. Young wants Dr. Pophal to take a look at the conduit and valve from the inside, using a cardiac catheter. While he’s in there, he’ll open up her restricted artery as best as possible with balloon procedure. If you recall, we did this in August 2005. It is our best bet to delay open heart surgery as Charlotte begins to outgrow her “parts.” It’s an outpatient procedure and, if I recall correctly, we were home by 9 p.m. last time. Will keep you posted.
Additionally, Charlotte has been taken off Lasix. Only 3 medications of the original 7 (or was it 8).
While in the Cardiology waiting room, we ran into Patrick, the little boy whose room was next to Charlotte’s in the PICU last summer. Patrick was recovering from repair of complete AV canal defect. He was older than Charlotte at his surgery and had already suffered from severe reflux necessitating an NJ-tube (bypassing his stomach completely). The team was having a hard time weaning him from the respirator and things seemed, to us, touch and go. When his mom, Mary, recognized us, I was happily surprised to see a big, pudgy baby Patrick. He’s recovering slowly but beautifully, and he too has progressed to a g-tube. A little PICU reunion can be good for the soul. Hi Mary! Welcome to the blog.