Corey's PC Appointment Today

We had some excitement this morning. Not in a good way. Corey and I went to Corey's pediatric cardiology follow-up (another post-op check-up), which Damian (and Mason) did not even attend, because we thought it would be a simple exam. Why do I never learn that things just don't work that way at Hopkins?

There were two issues of concern. First, Corey's heart rhythm on EKG is abnormal. Apparently this is not anything to get my knickers in a knot over, however. It happens with post-Fontan kids, according to Dr. Brenner, and we should not be particularly concerned. Still, there's nothing quite like hearing, "Your child's sinus rhythm is not normal" to get my own heart rate up.

The second issue is that Corey's liver is enlarged. Dr. Brenner examined Corey, and he didn't intend to do an echocardiogram today, but when he found the enlarged liver, he changed his mind. I thought perhaps the liver enlargement was due to Corey's Warfarin therapy (he's been taking a large dose, as the lower doses were ineffective), but Dr. Brenner reassured me that this is not the case.

And so, the main concern was actually the pressure in Corey's right atrium. If the pressure is too high, it puts too high a load on the left ventricle, and since as we all know Corey only has one ventricle, we need to protect it. This would mean possibly giving another med (Enalapril) to decrease the load.

So we had one seriously extensive echocardiogram. We're talking three Dora episodes. In the end, Dr. Brenner was satisfied that the pressures in Corey's right atrium weren't too high, the load on his left ventricle is not too much, the function of said ventricle is very good, and Corey is fine, sans Enalapril. Phew! My knees were a little rubbery at this point.

After all that fun, Corey had a finger stick to check his INR. His Warfarin therapy has been tricky. The goal range is 2.0 - 2.5, but Corey was as low as 1.1, to 1.2, to 1.3, then to 1.9 at last check. (When the numbers are too low, he is at risk for stroke.) We were surprised and happy to see him hit 2.5 today, which also means we don't need to have another blood draw for three weeks. Good news!

On the way out the door, we bought some gummy worms (and coffee for mommy) and headed home. We'll go to the mall this afternoon and shoot for some normalcy, but I must say, I was impressed with how well my little man handled himself. The echo tech told us that some kids kick and scream the whole way through the echo, because they are tired of people poking at them. Corey is in the other camp - he just hangs out and watches the show, and tries to talk the tech's ear off. That's my sweet little tough guy.

Goodbye Marty

Yesterday Corey and I attended a memorial service for a friend of mine, Marty Saletta. We played in a band together - The Dark Aether Project. (Ah, the joy of progressive rock music.) His memorial service was held in a perfect way by his lady, Darcy, at an ice-skating rink, complete with a soundtrack playing of music Marty loved. It was a celebration of his life, really, and I think it's just exactly what Marty would have wanted.

Corey was game for keeping me company and joining me on the ice, even though, at age 4, he's never had skates on his feet before. Mostly I think he was interested in seeing his mommy fall on her butt, though he did really well on the ice. After the skating, there was a time for people to share refreshments and stories about Marty. I managed to stay for all of about 5 minutes of that part before a 4-year-old tantrum threatened the peace of the gathering. So while I'm glad that I got to go, and I'm not sorry that I took Corey, I still have a few things to say about Marty.

First of all, when it came to living life, Marty didn't mess around. He was a technical whiz, but also a musician, and he played hockey with fervor as well. And then he got sick. Young. But I never knew him to indulge in a moment's self pity, and he was always in a good mood. He was absolutely the most positive person I've met in my life. And I lost touch with him a couple of years ago. Which, as only death can, leaves me with regret and reminds me to follow the cliches and appreciate those I love. I'm not going to do any "live like it's your last day!" preaching - that's too stressful. But I will try to take a page from Marty's book and live more like he did.

And now I have a story to share about one major way Marty impacted my life. One of our band members suggested Marty try internet dating. Marty said, "Bah!" But then he changed his mind and decided he would try it, only he was going to type in the search criteria for his perfect woman. We're talking everything - from level of education right down to her eye color. He figured there would be no such lady with such specific criteria. But he was wrong - there was one. Darcy.

After his success, he helped me try it as well. I thought it would be fun - I'd date a bit, meet some new people, and have a good time. Marty helped me upload some pictures and came up with a screen name for me. And I did meet some people, including my husband. So I, and my children I'm sure, are thankful that Marty helped us find our way to one another. If he hadn't helped me when he did, this family wouldn't exist. That's no small thing, and I don't forget it.

At the memorial service Marty's ice hockey gear was on display. Corey was fascinated. The skates had dirt and blood on them, and Corey astutely observed, "He skated a lot - his skates are really dirty." I told him why we were there, but I don't think it sunk in. He's 4 - how could it really? But that night he gave me pause as I tucked him in to sleep. He said, "Mommy, did you get to say goodbye to the person with the dirty skates?" I sighed and said, "Mostly yes, Honey." But not totally. So I'm going to do it now.

Goodbye Marty. When I heard that you had passed away, I sobbed like a big baby. But now I'm going to remember you with a grin, because I know you'd like it that way. I'm going to remember you next to me on the stage murdering the keyboard, and I'm going to remember you the last time I saw you - roller-blading with Darcy on the B&A trail, happy. No more tears, I promise, but I can't promise I won't miss you, because I will, and I do.