Wednesday, June 29, 2011

Happy Heart Day, William! Five Years!

Five years ago today, we gave our son over to the pediatric heart team with the UF Health Congenital Heart Center so they could fix his heart. Some days it feels like it was just yesterday, other days like it was a lifetime ago.

But one thing that never wavers or changes is our gratitude. Five years later, we are still so grateful to our pediatrician Dr. Dean Dalrymple and local pediatric radiologist Dr. Charles Williams, who finally diagnosed William at age 1, after he'd been so sick for a year. Grateful to Dr. Jay Fricker for taking care of William's heart until Shands hired a pediatric heart surgeon. Deeply grateful to that pediatric heart surgeon -- Dr. Mark Bleiweis -- for choosing Shands and for Shands choosing him. Because of these doctors, William is a happy, healthy, soon-to-be second grader who doesn't have a care in the world.

William, immediately after surgery to
repair his partial anomalous
pulmonary venous return, June 29, 2006.

William with big brother Martin, the day after surgery.
Uncomfortable, but loved listening to his bunny's heart.
Sitting up in a chair the day after surgery.
Not a happy camper, but when his brother
asked, "Does it hurt?,"
William replied, "No, not much."
Hanging out in bed on Day 2, still feeling sore, still hooked
up to chest tubes that drained blood from his chest cavity.
Back in the chair again on Day 3. This
time he gives his Grandma a smile.
Day 4 and feeling good. Getting ready
to go home! Yes, surgery was on a
Thursday. We were HOME by the next
Monday! That's how William and
Dr. Bleiweis roll.
"Seriously, Dr. Bleiweis. I am SO ready to go home!"
Saying so long to his favorite PICU Nurse Josh Campbell.

Since surgery, we have yearly checkups. We have echos.
We have EKGs.
Sometimes, we have CT scans of our chest
and visit our surgeon so he can see how much |
we've grown and how awesome we're doing
(doctors love to see that with all their patients!)
We even go to Gainesville to walk in the AHA
Heart Walk with our pediatric cardiologist
and pediatric nurse. We love Shands and AHA!
But mostly, we simply revel in every day. Feeling blessed that everything is going so well, and that William is happy and healthy. If you'd like to read more about William's journey, go to; his CarePage name is MasterWilliam.

Happy 5th Heart Day, William!
We love you so, so much!

Thursday, June 23, 2011

Parenting a Heart Kid

This is not William's X-ray, but it is an image
of someone with Scimitar Syndrome.
First of all, it turned out to be little more than a fragile, superficial vessel that popped and bled. William’s fine and we, his parents, are thankful to be nothing more than overly tired after a late night in urgent care.

But when your asthmatic, heart kid starts coughing up bright red blood after a coughing episode, you try hard not to work yourself into a panic. That’s what happened last night.

William was minding his own business, taking a shower, and abruptly started coughing. OK. Not unexpected: he has mild/moderate, chronic asthma, and it’s been triggered and exacerbated lately by a lingering respiratory virus, brutally hot weather and intermittent exposure to the smoke from Florida’s wildfires.

When my husband went to check on him, though, he was caught off guard by the bright-red, kind-of-big splotches of blood coming out when William coughed. And it kept coming. Husband went bonkers, scared witless. I tried hard to be just a “regular” parent – ah, he probably just popped a vessel somewhere, or maybe it’s really just a nosebleed traveling down his throat. But I’ll call Capital Health Plan Urgent Care; we’ll see what they want to do.

When I talked to the nurse, I told him my 7-year-old son was taking a shower and started coughing and then there was blood. The nurse didn’t seem overly concerned and asked if my son had been sick.

“He’s had a cough on and off for a few weeks. Dr. Jones saw him a week ago Friday and his lungs sounded a little junky, but when we went to see his pediatric pulmonologist that Monday at Shands, she said he sounded really good,” I told him casually.

I was not going to panic. Just because he’s a heart kid does not mean it’s a big-deal serious thing. I was going to play my “he’s just a regular kid” card, even if I died a little inside doing it.

Oh. Um, why does your son see a pulmonologist at Shands?,” the nurse inquired.

“He has chronic, but mild asthma, and he has scimitar syndrome. He’s really fine, though. He’s been very healthy this year,” I explained.

“What was the name of the syndrome again?,” the nurse asked?

“Scimitar syndrome. It’s part of his partial anomalous pulmonary venous return, a heart defect,” I said.

Oh. Has he ever coughed up blood before?,” the nurse asked.

“Years ago when he was a baby and had pneumonia, and then I think it happened once after he had his heart repaired several years ago,” I answered.

Oh! How far do you live from our clinic?,” he asked.

“About 10 minutes or less,” I answered. “If I have to choose between going to an emergency room or waiting to see our pediatrician in the morning, I will choose to wait and see our pediatrician. I think he’s fine.”

The nurse put me on hold. A minute later, he came back and said, “We’ll wait. Please come now.”

And we did. We saw Dr. Henry Gunter, whom we’ve seen before, and he’s a wonderful, kind and patient physician. He had read William’s chart. He knew William had asthma and he knew he had a “great vein anomaly.”

Dr. Gunter checked William’s ears, eyes, nose and throat. His throat looked red, now raw, but like it had been painted red. Dr. Gunter decided William probably had popped some small vessel in his throat, but just to be sure, he sent William for a chest X-ray.

Aside from the wire that has popped open at the base of William’s sternum, everything looked fine. And even the wire isn’t a big deal. Dr. Gunter was gracious and glad it was nothing more than a popped vessel. So were we!

I give myself credit for appearing to be just a calm, typical parent last night. But I won’t deny that the heart mom’s little voice kept whispering in my ear, “He’s probably fine, but he’s a heart kid with respiratory issues. You can just never really know. The fact is, you might be home in an hour or you might be admitting him to the hospital. You just never know.”

That’s what it’s like. That’s how it feels when you’re the parent of a child with a congenital heart defect, or any other chronic illness. You work hard every day to be just another parent; but there’s always a little piece of you somewhere feeling a twinge of panic when something out-of-the-ordinary occurs.

Because it’s true, you really never know for absolute sure.