Wednesday, November 16, 2011

Luke's Cardio Appointment: Waiting Explained

Leading up to this cardiology appointment, I had been wrestling with thoughts about Luke's Fontan. As much as I dread putting Luke through another open heart surgery, and as much as I fear the possible complications, I am his Mom and I want the best for him. If the Fontan circulation would help him breathe a little easier or run a little longer, then I want that for him.

I have followed other heart families through their child's Fontan and the difference before and after was drastic. Dr. Stefanelli does not feel like this would be true in Luke's case. With Luke's heart function so good and his sat's relatively high, he does not think Luke would be a totally different kid after the Fontan. He won't go so far as to say Luke will never have the Fontan done, but he is still not ready to put a timeline on this final surgery. He doesn't agree with the school of thinking that once you hit a certain weight you move forward without any other indication. And his perspective is that there is no other indication right now that Luke needs the Fontan. In a year from now could there be need? Of course, but I get the sense that we could still be putting this surgery off a year down the road.

Dr. S. explained the waiting to me in a new way yesterday: As soon as you do the Fontan (and that is to say that it is even successful in the first place and a take-down is not needed), the clock starts. The clock isn't ticking down to heart failure as much as it is to liver failure. As more and more of these single ventricle kids grow up, docs are realizing that the liver does not tolerate the Fontan circulation forever.

So we wait. The risk is too high for how well Luke's heart is working with the Glenn circulation. Although Luke doesn't have any semblance of a right ventricle pump, his heart almost fits into the category of a one and a half ventricle. His left is a big ol' strong pump and for that we are so very thankful.

One new development seen on the echo that we'll be keeping an eye on is a collateral vessel growing off his aorta. It had grown a bit since last May and may start causing Luke's sat's to go up. If it does, Dr. Stefanelli will coil it off in the cath lab at some point. But for now it's just a watch and see. Luke was satting yesterday between 84 and 86%. I really hate those sat machines. It took about three minutes to get an accurate read, and for those few minutes it was reading 65%. Do they know what that does to a mama's heart?!

The coarctation site was still wide open from the angioplasty a year and a half ago, which was great news, and his EKG and blood pressure (100/56) were fantastic.

The actual EKG is absolutely painless, but for most heart kids, taking the stickers off afterwards is the worst part of the appointment. We have never had a tearless EKG until yesterday. I watched Luke just shut his eyes and grit it out, telling the nurse, "Just do it! Just do it!" Stud.

Loooong echo, but my big man did great, watching Peppa Pig and sucking suckers.
We love you, Northwest Children's Heart Care, but we hope to not see you for another six months!


  1. Wonderful news! Thanks for the explanation. Very helpful information and things to think about.

  2. Fantastic news!! I am at the same crossroads.. if it ain't broken don't fix it! :) Well, it's broken, but you know what I mean.

  3. Yay for the great appointment!

    I know the feeling...that wait, wait, wait...I know it's coming but when...let's just get it over with, etc. Ugh!

    I didn't know about the clock starting for the liver. I'm glad you shared that! (Or should I say, great! Something else to worry about?!)

    Glad things are going well. Luke looks SO BIG in that picture!

  4. Sounds like great news to me! Each heart child is so unique...and that is evident for us all the time. Trust your amazing doctors and GOD, of course!

  5. Luke is growing up into such a handsome young man. As you wrote about his one and a half ventricle make up, it dawned on me that he has the opposite set-up as Natalie. Natalie has her right and about a 1/3 function on her left. The little half a ventricle seems to be helping our kids out. :-) Lets pray that by the time our kids have the Fontan, the docs can come up with a solution to the liver trauma.

  6. I say YAY too! I do know the stress with this but as it was said, trusting in God is the only way to manage the anxiety of having surgery looming. I didn't realize he has a 1 1/2...very cool and helpful in keeping his function up and sats stable. Hey, maybe Luke will hold the record for the oldest Fontan?!? Or better yet, maybe not have to have it all. That would be wonderful. He does look so big there too, glad his appt. went well Jesse!

  7. Good New! I check on you guys from time to time and I am always so happy to hear how Luke is doing. How fun to get to watch him
    play basketball. Sounds like you all are doing great! Jacob is doing well, loves daycare and is so happy. Merry Christmas and Thanks for your updates!!