Cath Results

I am so happy to now possess an accurate, to-date diagram of Luke's unique, God-given heart. Like most kids born with congenital heart disease, Luke's heart has never fit into those 400 or so "typical" heart defect diagrams, so all we've had is a near-match, with Dr. Stefanelli's additions and subtractions in pen. Here is what Luke's heart looks like today (minus the coarctation, which was ballooned yesterday in the cath lab):

You can see his Glenn and DKS procedure sites, as well as the coarctation on the descending aorta which led us to the cath lab yesterday. Before the ballooning, that narrowing measured 5.5 mm, whereas the aorta above the narrowing measured 8 mm. It is considered mild coartation, but again, Dr. Stefanelli reiterated his goal of eliminating any and all unnecessary stress on Luke's one ventricle.

Dr. Stefanelli started with a 9mm balloon, which dropped the peak to peak gradient from 21 to 13. He then inserted a 10mm balloon, which dropped the gradient to 7 mmHg. He would have liked to go a bit larger, seeing that gradient down to 0 or 1, but he said he was limited by the width of the aorta above the stenosis. Any gradient under 20 is considered "good", so he was happy to get that number down.

While he was in there, Dr. Stefanelli did two other things. First, he threaded the catheter into the ventricle to measure the filling pressure. My understanding is that this measures the function and squeeze. Luke's filling pressure was 11, which indicates very good squeeze, affirming what his echo's have shown.

Dr. Stefanelli also took pictures of Luke's right and left diaphragm. Unfortunately, that left diaphragm has not regained any function in the three years since Luke's plication, where is was stitched down surgically. We were hoping that paralysis was temporary, but no such luck. It isn't a huge deal in the whole scheme of things, but it definitely doesn't help someone with a Fontan circulation. Dr. S. feels like this is the main reason Luke's breathing has gotten heavier as he has gotten bigger. He said Luke has had to learn to breath from his abdomen without that functional left diaphragm.

Every time we talk with Dr. Stefanelli, we get the feeling more and more that he is in NO rush to send Luke for his Fontan. Because Luke doesn't fall into the hypoplast heart category, because his sat's are so high and his function is so good, I'm not sure we will even head up to Children's next summer. I think he'd like to hold off as long as possible, since he's pretty sure we'll deal with major effusion and drainage issues after the Fontan. I think it would be a different conversation if Luke's sat's had settled out in the high-70's, but they settled out in the mid- to high-80's. Just another opportunity for us to give over our plans to God, right?

Luke did great in the lab, however, he had one coughing episode (remember his stuffy nose?) that forced the anesthesiologist to suction Luke a few times, as well as bag him for a few seconds. Dr. Stefanelli told us that he didn't even know it happened since he had turned to the computer and it was over so quickly, but you never want to hear your child stopped breathing! Thank you, Lord, for your protection of Luke. We love Dr. Stefanelli ... he said, "He didn't go into cardiac arrest or anything." Okay, then .... good to know!

Here are a few pictures from our day yesterday. Luke is doing well today, although I haven't been able to take off his bandage yet. He is kind of freaked out about me touching it. No, not kind of, really freaked out. He keeps telling me he still needs it, that his owie isn't better yet. I told him I could do it now or Dad can do it tonight in the bath. He picked Dad. Smart kid ... he bought himself some time.

Happy boy, waiting in his yellow scrubs.

 About three minutes after his Versed dose. He was a total noodle in my lap!

 Walking upstairs to the cath lab. When Rog handed Luke to Dr. Boorman, he asked him in a sing-song voice, "Where are we going?"

First smile after the cath. There's our boy!

Thank you, so much, to everyone for your well wishes, texts, phone calls and prayers. Thanks to Pastor Mark who came bright and early to the hospital to pray over Luke. Thanks to my dear friend, Erica, who has lined up meals for us through the entire weekend! Thanks to the nurses who were so competent and compassionate. And thanks to Dr. Stefanelli. We don't believe our boy would be doing as well as he is without him.