Monday, December 29, 2008

The best Christmas gift came a little late

Hands down the best gift Rog and I received this year was hearing from Dr. Stefanelli how great Luke is doing and how good his heart is pumping away! So good, in fact, that he is scheduling us for our next appointment in SIX months. We knew that Luke was doing well leading up to this appointment — eating well, growing, good color and energy — but there is always that thought in the back of your mind that something could be wrong. It was a gift today to be reassured that we can trust that when we think Luke's doing well, he is doing well.

The other piece of good news is that Dr. S. thinks Luke is ready to drop his Lasix and Spironolactone. We will keep him on Diuril for now, but great news to get to drop two diuretics! Luke has always struggled with effusions and holding onto fluid post-surgery, but Dr. S. thinks we are far enough out that Luke's lymph system is completely healed and dropping these doses shouldn't negatively impact him at all. The good thing is that on Luke, we can spot fluid retention very easily.

So we'll go from 3 meds in the morning and 2 at night to 1 med in the morning and 2 at night (plus his aspirin every other day)!

I wish I had brought my camera because this appointment was the first time they had Luke weighed and measured the "big boy" way. He stood against the wall for his height (like Elmo) and stood on the scale for his weight. Our baby's growin' up!

It was very interesting seeing the difference in Luke's reaction to the stickers and machines even from three months ago. This time around, he was having no part of the EKG or blood pressure procedures. The first 5-10 minutes of the echo was rough, too. He cried and pushed the wand away and kept saying, "go home, mama's car". I'm wondering if at this age they have a harder time when they don't have a say in what's happening to them. We made it through and with a sucker, a movie and an extra echo wand, the tech got almost 20 minutes of pictures! We never did get the EKG, however. Oh well.

I don't want to borrow worry, but yesterday's appointment felt like a glimpse of the Fontan. Luke is so much more verbal than even three months ago and can say what he wants and doesn't want. I've heard another heart mom say the first two surgeries are the hardest on the parents and the third is hardest on the child. But I have seen Luke's resilience and believe in faith that he will come through the Fontan strong and fighting.

God is Good all the time, He is the same yesterday, today and tomorrow!


  1. Jesse,
    That is wonderful news, absolutely wonderful! I'm so happy for Luke and for you and Roger. Happy New Year!

  2. One blog led me to another..... It's great to see how your precious Luke is doing. I hope he gets through his Fontan just as well. My youngest son is a heart baby too.

  3. What a wonderful Christmas present! I'm so happy for the good report. We got a good Christmas report, too, and it couldn't have felt any better. It was the best Christmas gift imagineable.

    When are you thinking Luke will have to have his Fontan? He will do great...he's so strong!

    Merry belated Christmas to you all! oxxo

  4. What awesome news!!! Yeah, Luke! Jesse, I bet you're so relieved and a little spooked to wait 6 months :) but that is great news and only reassures you that Luke is doing so well...heart wise and with everything else! Quite the little talker, I love it!!! He knew what he wanted! Congrats on the great report!