Monday, September 22, 2008


Luke continues to "cruise" along this CHD road and Dr. Stefanelli couldn't be happier. And when Dr. S. is happy, Luke's mom and dad are happy! It must be so gratifying to see a child go from complete congestive heart failure in infancy to a thriving, happy, energetic little boy. We talked about the time Luke spent at Mary Bridge Children's Hospital before his first surgery, where he was continually fed high calorie formula through his NG tube for eight straight days and did not gain one ounce. Dr. Stefanelli guesses his heart was having to work five to six times as hard as it should have been. What God is teaching me through this journey is that He never changes. He was there when Luke was really sick and He is here in his health. And He will be there when we face the Fontan. What God wants from me is to find my joy and peace in THAT promise; circumstances are irrelevant. Oh, how easy to type, how hard to live out. "Jesus looked at them and said, 'With man this is impossible, but not with God; all things are possible with God.'" —Mark 10:27

Prayers for a good report were definitely answered yesterday. Luke's saturation levels were at 89% (this even with a little cold); blood pressure was good, EKG looked good; weight was up. I think I needed to hear yesterday that Luke's heart is strong. A few other comments from Dr. S. I was happy to hear:

"He looks fantastic. He really looks so good."

"He is going to cruise until his next surgery."

"Wow, he even has a little chub on him!"

(You can picture me basking in these words.)

Rog and I have noticed we hear him breathing a little louder (not necessarily heavier) when he's really active (which is most of the time), but Dr. S. thinks this probably has a little to do with his cold, but mostly this is probably Luke's norm. He couldn't hear any congestion in his lungs, and the more audible breathing definitely hasn't slowed him down at all.

For the past months, Rog and I have had in our minds that most likely Luke's next surgery (the Fontan) will be in the summer of 2010, but I still thought if there was a possibility of getting him to 30 pounds by next summer, they would operate then. It was good to hear Dr. Stefanelli say that there is no benefit to pushing his weight to get the Fontan done a year earlier and no harm in waiting the extra year. It's nice to have a more definitive timeline for Luke's surgery and I must admit, nice to let go of the goal of pushing Luke to hit 30 pounds by next August.

His weight is up to 23.5 pounds, so Dr. S. upped his Enalapril to 1.5 mL's twice a day instead of 1 mL twice a day. His Lasix, Spironolactone, Diuril and aspirin will stay at the same dose. Luke will need a flu shot, but because he will turn two right at the beginning of Syangis season, he won't be getting the RSV shots this year. Good news for Luke, not to get poked every month, but Mom and Dad liked those shots for the immunity boost it gave him. Dr. S. says he'll be okay if he gets RSV this year. Probably won't be fun, but he'll be okay.

I can't forget to mention that Luke was such a good boy at this appointment! The key was the fruit roll-up I brought. During the EKG, we were able to hold his hands down (so he didn't pull off the stickers as fast as Nurse Jodi put them on) while I fed him his treat like a baby bird. Jodi was fanastic with him, and so patient as we tried to get his sat measurement. I will tell you he is one fast little boy at grabbing that wire clipped to his ear!

Since Luke hasn't had any labs drawn since his Glenn last summer, Dr. Stefanelli wanted us to go ahead and do a blood draw to make sure all his levels look okay since he is on diuretics. Again, Luke was an absolute trooper, and with all the terrible blood draw experiences we've had with him, this one was a piece of cake! The nurse at the Mary Bridge Health Center got the blood on the first try and Luke cried less and recovered faster than he did at his RSV and vaccination shots! Dr. S. will call us with the results this week or next.

Thank you, Lord, for a wonderful appointment, for an incredible staff at NW Children's Heart Center, and for never changing.


  1. Wonderful news, Jesse, and I am so glad to hear it!

  2. Such great news! It's so wonderful to get those good reports. Sounds like he's got the routine down at the dr's office! I love the fair pictures too :) What fun times and right out your back door! Good luck with the heart walk too- We won't be able to make it, would have been so fun though. With the blood drive being on Friday, it would be too much on Maddie (and me!). We would LOVE to meet you soon though...maybe November will work? We're coming over to the main campus on Nov. 24th for her next appt. That would be so fun if we could make that work!!!
    Take care & give that little man a hug from us! We'll be thinking of you guys at the heart walk!
    Katie & Maddie