Friday, December 11, 2009

Cardiology appointment

God, the one and only —
I'll wait as long as he says.
Everything I hope for comes from him,
so why not?
He's solid rock under my feet,
breathing room for my soul,
An impregnable castle:
I'm set for life.
— Psalm 62:5, The Message

I tried so hard to keep the possibility in my brain that the Fontan might be pushed to the summer after next. I really did. But when Dr. Stefanelli said those words today, I was jarred. My thoughts went something like this: "But I don't want to wait another year. I want to be done with this stage." Thankfully, God immediately pointed out that this entire journey is not about me. (Did you notice how many "I's" were in that thought sequence? Yeah, me too). Based on my initial reaction, you'd think it was me undergoing open-heart surgery!

Dr. Stefanelli feels that with how well Luke is tolerating his current physiology coupled with the fact that he won't be quite 15 kilo's by this summer, he can't warrant pushing Dr. Cohen to do the Fontan on the earlier side. If Luke was showing him any signs of needing help with his heart function it would be a different story, but he's just not. His echo was fantastic, his sats are exactly where he'd like them at 86-87%, blood pressure normal, not to mention that he's growing and thriving and energetic.

But just because I can see the rationale for the new timing doesn't mean it's easy to swallow. We're going to have to sit with this one for a few days because at this moment I'm not even sure how to make that shift in my head and heart.

In the meantime I will do the following: Enjoy my son, give thanks for his health, and "wait as long as He says" because "Everything I hope for comes from Him."


  1. Just be thankful you have another year without surgery. It really is a gift, not a burden. You are so lucky that Luke is doing well enough to wait. It will be so much easier when you can reason with him all that much better about all the crap he will have to endure. In the mean time, if he drinks a lot of water, make sure he likes apple juice too. I didn't do that and they wouldn't let Carla have water. All she likes to drink is water. It was just terrible for her.

    Congratulations on Lukes heart health! What terrific news!

  2. Oh, Jesse! I can imagine your shock! We are in the same place as you --- getting ready for surgery. I know just the thought process that you described. Thank you for reminding me, too, about this being about God and His perfect timing for our little heroes.
    Praying for you!
    Pam Owens

  3. Waiting is one of the most difficult things for me too. Especially when I think I have it all planned out just right, and especially when it comes to surgery. I totally understand your being ready to get it over with so you can move on and have a "normal" life with no surgery looming. It's a good thing us moms don't make those decisions, huh?

    Like you said, God's timing is matter how difficult it is for us to give up the control we sometimes think we have. We're praying for Luke and both of you.
    Congrats on the great heart function news!!

    Oh, and about the last post where Luke was doing echoes and EKGs...WOW! How FUNNY and creative! Y'all are good! I'll have to remember those tricks. I can't think of any better props than the ones you used. Funny!!

    Big heart hugs and prayers,

  4. Ahhh! I feel your frustrations...but like you said, this is about His time. What a blessing to know how well Luke is doing and having some extra time may be the best in the end. Like Angie mentioned to me, you never know what may be available and more effective in helping our little ones and their future. Praying for you on accepting this new plan. I know how I am with my plans :) Hugs to you!

  5. Jesse,
    Wow, that's a tough one. It is wonderful that Luke is doing so well that they think he can wait. Another year to grow bigger and stronger and be ready for the challenges of the surgery. That is all good, really good. The hidden nugget is that he is a healthy, happy boy right now - a true blessing. Ah, but it's so difficult for Mom and Dad to wait and worry and know what is looming in the future. I know that I would struggle with that. I also know that you will come to terms with it and find a way to manage it. You are a good and strong Momma. Our best to all three of you!

  6. Oh Jess.... that is quite a shift. Makes sense though why they would want to wait. Does sound better for Luke. Oh girl, may God give you the ability to adjust joyfully to this new plan! I love you guys, and we'll talk soon! keeping you in my prayers this week as you continue to adjust to this new timeline.


  7. I am so happy Luke is doing so well that they don't need to do the Fontan any time soon. It is hard to think of any child going in for open heart surgery and when it is your own, it is the hardest thing in the world. God will tell you when it is time...He knows the perfect time for everyone.

    God bless and have a wonderful holiday!

  8. I completely know where you are coming from with this. When we moms have something "set" in our minds, it is hard to reset that. The flip side is that Luke is doing GREAT! Wow! What a star!

    I pray that you can reset your clock relatively easily. Enjoy that little man of yours! Have a great week. xo