Thursday, June 10, 2010

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.


  1. Amazing news!! I'm going to ask for versed before Owen's next cath... we haven't tried that yet.

  2. Interesting picture of Luke's heart. Wish we had a detailed diagram like that of Natalie's. I know in my head what her's is like, but it's hard to explain to other people. It's such good news that Luke's sats are so high. Would be nice! ;-)

    One thing that I was thinking about today as I was feeding our fourth child...I remember always anticipating the next phase in life with my first child. I was always pushing her to crawl or walk or do the next thing. Now that I'm farther down the road of parenting, I think I'm just trying to enjoy each stage that we are in. In a way, I am sad when our fourth moves on to the next stage. All that to say, I hope you are able to enjoy these years and the waiting! I know one of these days I'm going to be shocked back into reality when the cardiologist will start talking about taking Natalie back to surgery. Until then, we have to deal with the "TWOS." :o)

    Thank you God for the good news!

  3. So glad to hear that all went well!I love your detailed posts and sweet pictures. Give that sweet little boy a squeeze from the Hampton Family and next time include us on the Meal Making list!! Our conituned prayers are with you and Luke's special HEART!
    Steph & Family

  4. so happy. what a wonderful family you all are!

  5. What great news! We've been sending prayers your way and God is certainly hearing them! It was great to see you, Jess! Miss you all lots!

  6. I read your cath updates and have been meaning to come back to comment. So here I finally am! I'm glad the cath went well. I know the post-cath feeling, being so glad to have it behind you. I absolutely love the photos!! Luke's versed photo is pretty funny. Elijah took that once and Dan and I laughed so hard at the way he acted. :)

    I hope you guys are having a good week! Thanks so much for the updates on your sweet sweet boy.

  7. Amen and amen! I'm all about the "holding off" process. Just say no to excessive drainage! :) So, now when are we all getting together?????
    Love you guys and your big brave little buddy!
    Love, Cindy

  8. I am so thankful I made my blog public because I love connecting with all the heart moms that are out there. It's so comforting to see that things can turn out so well. Luke looks fabulous! I was so excited to see that picture of him in the yellow scrubs. He is so handsome and I think his scar makes him even more so. He's so big & healthy! :) YAY! I don't come across that many older heart babies that are accessible through blogs. Thank you for commenting on my blog otherwise I probably never would have been able to see yours.
    Atley was and still is diagnosed with HLHS and DORV (Double Outlet Right Ventricle). The reason we were able to skip the dreaded Norwood is because of this other defect the DORV. It basically did naturally what they would have done surgically. He will continue on the same path as most HLHS babies now though with the Glenn coming up for us around 6-9 months old. Finishing up with the Fontan 2-4 yrs old and a Heart Transplant being our eventual end goal.
    We have been so incredibly blessed and are truly grateful for every day. Especially those "normal" days where we're able to just go outside or even run an errand.
    I've really appreciated your blog and will enjoy following Luke's journey as it gives me hope for our future as well.
    Thank you again so much!