Monday, June 29, 2009

All good

I write this post with a heart full of gratitude and a body that wants to sleep! It's crazy how emotionally draining these appointments (and the time leading up to them) are.

Most telling of how well Luke is doing is that Dr. S. doesn't want to see us for ANOTHER six months.

First was the EKG, which we couldn't get last time since Luke pulled the stickers off as fast as the nurse could put them on. He still didn't love the idea of the stickers, but with the help of bubbles and lots of encouragement, we got a good reading this time around. I'm sure I've said it a hundred times here, but we LOVE the Northwest Children's Heart Care nurses. They are SO GOOD!

Luke did PERFECT for his blood pressure and his blood pressure was near perfect too. 90/60.

With sucker in hand, we walked Luke over to the weight/height/sat monitor area. It almost brought tears to my eyes seeing my baby step up on the scale and then stand against the wall for height like such a big boy. He was 26.6 pounds and 34 1/2 inches. Sat check was next and Luke was very willing to put the pulse ox on his finger after we first put the pulse ox on dinosaur's tail. Sats were 86-87!

The first reading was 71 and my stomach sunk a little, but I knew in my heart that wasn't right. After re-adjusting the pulse ox on his finger, 86 popped up and everyone liked that number better!

Next was the echo. This is always a bit of a stretch for Luke, to ask him to lie still. He is not a kid that lies around, or sits much for that matter. We'd get a minute or two of stillness out of him before he'd wriggle upright and shout, "OKAY! Time to get down!" Bubbles again came to the rescue, as did his peanut butter crackers. Thankfully, they got good pictures in a short amount of time. Function was great, mitral valve mildly leaky, but it always has been, so no concern there. Glenn and DKS sites looked clear and open, and his atrial septum was still wide open. This has been something they've watched carefully, since between his PA banding and his Glenn/DKS, that septum had narrowed significantly due to scar tissue.

The only change is that we'll increase his Enalapril dose to 2 mLs twice a day instead of 1.5 mLs.

We had talked to Luke a lot about this appointment before the big day and one of the things we mentioned was that Dr. S. would listen to his heart, just like he listens to our hearts with his toy stethoscope. I brought Luke's stethoscope today and when Dr. S. listened to Luke, Luke listened to Dr. S. A sweet moment if I ever saw one!

We talked about the timing of Luke's Fontan and Dr. S. is planning it for late next summer, as long as he hits the 30 pound mark. I really think we can get him there and we can go as late as October if he needs a little extra time. Emotionally, Dr. S. doesn't like his kids to be much older than 3 1/2 for the Fontan, and I completely agree. I wish I could set the date in stone, but then we would probably spend less time on our knees. Oh Lord, thank you for continuing to grow us in You!

I asked about this coming year, if we'll see a decline in energy, a change in color, etc. as we get closer to the next surgery. Dr. S. was confident in his response that he believes Luke will not decline before the Fontan. Because Luke is so strong and energetic now, he doesn't even think we'll see much different pre- and post-Fontan. Maybe just that his lips won't turn into blueberries when he's cold =)

As we were talking about the Fontan, he did mention again that we need to be prepared for those nasty pleural effusions. Luke has consistently struggled with effusions post-surgery and Dr. S. doesn't think this time will be any different. After the Fontan, Luke will have all passive pulmonary blood flow, so when fluid does accumulate, it is more difficult to get rid of. No, we don't like to hear that, but it does give us something very specific to pray against!

On the way to our appointment, we were listening to the hymn "It is Well with My Soul." I felt a much-needed peace, knowing that even if we didn't get the great report we did, God would be our Peace.

Thank you all for praying and checking in on us!


  1. A sigh of relief, a smile and a thank you. That's what I feel right now, leading me to think that I can't possibly feel a fraction of your peace and thankfulness. So happy for Luke and for you, Jesse. And especially thankful that if a little boy had to be born with a big problem, that he was born to you. You have handled this with more grace than I thought was humanly possible. Luke is blessed to have you for his Momma.

  2. Hooray for the great report! iTunes played that song this evening as I was thinking about the layoffs at work.

  3. So happy Luke's appointment went well and he got a great report! I bet you're so relieved. His sats are so high too! I bet it's also nice to get an idea of when Dr. S thinks his Fontan should happen. You now have some time to prepare...and 4 pounds should be a piece of cake!

    Congrats on 6 more months of freedom! NO worries, right?!? Like that's ever possible!

    Hugs to you guys and way to go Luke!

  4. GREAT NEWS!! I can't imagine going every six months. We're on an every three week schedule. Sounds like you have a while until the Fontan.. ENJOY IT! :)

  5. I LOVE having specific things to pray against! We will pray with you against pleural effusions.

    You are so so right.. It is just crazy how emotionally draining an appointment (and the time leading up to it) can be. I always feel exhausted afterwards, too.

    I'm so happy about the GREAT report! What an amazing little cooperative and energetic boy you've got there. He has come so far...and will continue to go even farther! Give him lots of hugs for me. Sending you hugs, too, for enduring the emotions of another card visit! xo

  6. Terrific News! Way to go Luke on handling the appointment like a pro. I love your idea of practicing before the big day. Hope the last few days after receiving a good report have brought you much joy and peace. I know I get so geared up for Gracie's appointments, that it takes me a little while for good news to settle in. Congrats!