Tuesday, December 15, 2009

Details, details

When I posted on Friday, I was pretty focused on the switch-a-roo of the Fontan timeline and didn't get a chance to write down the details of the day. And I couldn't let the opportunity pass to share about how GREAT Luke did at the appointment - prayers were answered!

We got to the clinic a little early as I was hoping Luke could play a bit in the office and get comfortable before being called back. He may have gotten a bit too comfortable as before I knew it he was walking up and down the hallways saying, "I'm looking for Dr. Chris. Where's Dr. Chris?" The NWCHC staff is so gracious and let Luke walk back to "Dr. Chris's" office and say hello to him. I'm so glad Dr. Stefanelli has no other patients, at least not in Luke's world.

When we got back to the exam room, Luke began getting a little whiny about the EKG. "I'm not ready for the EKG. I don't want to do that." It was so interesting to me that that is what he chose to focus his anxiety on. We held off on that and started instead with weight, height and sat's. Everything Luke had to do, Thomas the Train would do first. Again, thank you nurses for accommodating us! We headed back to the room and Luke started in again on not wanting the EKG. It goes to show that it never hurts to ask — Dr. S. was fine with us skipping that dumb ol' EKG today.

It was the first appointment that I can remember where Luke not only had no fear of Dr. Stefanelli, but couldn't get enough of him. He continually asked if we could go find him. I think Dr. S. bumped up even more on Luke's fan-list when he showed him how to "ride" his swivel chair.

The echo was next on the docket and as much as I didn't want to pull out the mimi (pacifier), I did. And boy, it worked wonders. He laid back and watched Cars as calm as could be. Even getting those nasty aorta pictures way up on the neck didn't phase him. He didn't love the lower heart view which is right at that base of your sternum, but we managed for a short bit.

Dr. S. came in to discuss the echo and Luke kept trying to go out the door into the hall. After the third attempt at keeping him in the room, the nurses said, "Don't worry. We've got him!" Ah, being able to listen to the cardiologist without reining in a two-year old. What a luxury!

Like I posted before, Dr. S. was thrilled with Luke's echo: ASD wide open, Glenn site wide open, function great. He did note one thing he is watching, although he quickly clarified he wasn't categorizing it as a "worry", just a "watch". Luke has a bit of turbulence and "swerve" in his descending aorta and possibly some velocity pressure difference. It is not negatively impacting Luke, but it is something that could possibly need ballooning during his pre-Fontan cath. He said if Luke's heart was normal, he wouldn't think twice about intervening, but because we expect more from Luke's heart, he wants to give it every advantage he can.

I was a little nervous to see what Luke was up to (whatever it was, he was quiet!) and when we came out of the exam room, we see him sitting in the nurse's chair typing away on her keyboard. "I'm checking my email! I'm working!" he exclaims.

We'll be looking for his check in the mail.

God, doing his God thing, has begun to change my perspective on the timing of Luke's Fontan. Through His Word and other people, He has been bringing to mind the positives of waiting an extra year. Our prayer as a family has always been, and will continue to be, that Luke's Fontan is in His perfect time, not ours. Far and away the biggest positive to this turn of events is that it once again forces Rog and me to lift our eyes to the Lord and to cling to His sovereignty.


  1. Rick and I went for a run this morning, and I mentioned that Luke's surgery had been postponed. You know what Rick said? He said "I wouldn't wish Luke's condition on anyone, but if someone had to have it, Jesse is the right parent for it." And you know what else? He is exactly right! There is a really old Ann Landers or Dear Abby column that I cut out and saved for my parents once. The conversation with Rick reminded me of it. I'm going to find it and email it to you. You are the best Jesse!

  2. Okay, I found it. It was originally written for the parents of children with Downs Syndrome. The first time I read it, a long time ago, I saved it for my Mom (my sister is disabled). And though the description of the child does not fit Luke, the sentiment about the parents fit you! Here's the link:

    Here's another that I like (again, it's the thought, not the specifics): http://www.cafemom.com/journals/read/794792/Welcome_to_Holland_a_poem_for_parents_with_a_special_needs_child

  3. So great that the appointment went so well. Luke was a trooper! We skipped the EKG at our last visit too. Those stickers are no fun!

    Everything for a reason, even the timing of Luke's surgery.

  4. I'm glad you're feeling a little more at peace with Luke's surgery being later than you'd originally thought. Being comfortable with His plan is tough, but I think that's part of it... The more difficult things are to deal with, the more we have to have faith and rely on God. I'd say that's part of his grand plan! :)

    Luke seems to be quite the little grown up and knows exactly what he wants and needs. Lol! How funny that he had to "check his email" and "work" while there. That's priceless.

    Big heart hugs and prayers,

  5. What a great cardiology experience! Well, "great" is a relative word for that, of course. Luke is such a big boy. I love that he was checkin' his email at the nurses' station. :) And how wonderful that Luke has a renewed passion for his trusty cardiologist! Elijah just recently started showing interest in his, too, for the first time ever.

    You are such an inspiration to me, Jesse! Thank you for sharing what is on your heart. xo