Monday, July 18, 2011

Sat check

After examining, reexamining, thinking, over-thinking and fretting the last two weeks about Luke's coloring in his hands and feet, I finally took him in to our cardiologist's today for a sat check. Two weeks ago, Luke got a summer cold, so I chalked up his purple-ness to that. But his nose has been clear for a few days and I still felt like his color was off.

His sats were from 81-84 at the office today, staying mostly at 83%. This is about the same as when we were in for his big appointment in May. He was congested back in May as well, so I didn't think too much about it, but now I'm wondering if this is his new normal. Since his Glenn four years ago, Luke has always satted 85-87%, so I am not loving the lower 80's. I asked Dr. S. today if in the next couple months they don't bounce back up a bit if we would start talking about the Fontan. His response was that he doesn't really want to talk about the Fontan unless or until Luke is satting in the 70's. He reminded me today that Luke is still strong, sats of low 80's are acceptable, and this next surgery will not be an emergent one. All good things to remember, but I have a hard time seeing any kind of change in Luke.

I know the Fontan will happen eventually. I also know that it can benefit Luke, but there is much of me that wants to believe he'll never need it. Luke has two cards stacked against him going into the Fontan, which cause our cardiologist to hold off as long as possible. One is Luke's history with pleural effusions. The second is his plicated diaphragm. Neither help a body adjust to a Fontan circulation. That doesn't mean that Luke won't tolerate it, it doesn't even mean that he won't sail through the surgery, it just means he has a higher chance of a tough recovery.

After today, and reflecting on how much of my thoughts have been taken up by Luke's health the past two weeks, I realized again how closely worry correlates with the time I spend — or don't — with God. Worry is such a thief; stealing joy and peace right and left. Experiencing peace and joy doesn't mean I don't think about Luke's heart, or advocate for him, or take him to the doctor when I'm concerned. Experiencing peace and joy means that I live with the assurance that God is bigger than a heart defect; that His plan for Luke's life is perfect as is His love for our family.

Today I return to this truth: "You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the LORD forever, for the LORD, the LORD himself, is the Rock eternal." —Isaiah 26:3-4


  1. I needed this, and definitely needed that verse. I, too, can see a direct correlation between worry and the amount of time I spend with God. I don't think I realized it though until I read that. I've had a lot of worry lately about the Fontan too, even though I know it's (hopefully) at least a year away. But you're right. God is definitely bigger than heart defects!

    I'm glad Luke is looking good and that his cardiologist is happy with the way he is right now. Hopefully you'll be able to have some peace with that and can be more worry free (somewhat) for a while. Enjoy those babies!

    I'm off to memorize Isaiah 26:3-4. :)

  2. Jesse,
    I am with you on the "return to truth". How do we get sidetracked so easily and often??? Worry is like a fast track off of God's track, that's for sure! Thank you for reminding me to cling to the truth!
    I am glad that you followed your instinct and took Luke in. That is never a bad idea. As heart moms and dads we must have keen instincts about our kiddos. They are good at throwing us for a loop. Glad that Luke is doing well.
    Heart hugs,

  3. You are so right, Jesse! Worry IS a thief...I have never thought of it that way, but so very true. To be honest, I think worry stole away the joy I should have had as a new mom. I am slowly but surely learning how to feel the joy of being a mommy, but it has been really hard as a heart mama. Being at peace and being happy doesn't mean we don't care; it means that we know He is in control and just as you said, His plan and His love is perfect. Thanks for the gentle reminder. :)

  4. as always, love your posts and your heart. So good to talk to you last week and can't wait to meet Laney sometime soon!

  5. I agree with you...worry steals a lot of things from us heart mommies and daddies. It is often hard not to worry though because we love our precious children so much and want only GOOD things for them.

    Praying for you guys!!

  6. Oh Jesse. I wish I could have a long chat with you in person. You are SO RIGHT about worry. I despise it! It robs me of so much joy. When I allow myself to get caught up in it, I feel so far from God. I hate those times. Now, after Elijah SAILED through this past surgery, all of the worrying I did leading up to it was for nothing. What the heck. Anyway, I can totally understand your worries about Luke and his looming surgery, and I can also understand your desire to NOT worry about it. God does have it all taken care of. Rest peacefully in His arms! Sending you love!! xo