Thursday, March 14, 2013

Cardiology 4-1-1

Overall, I would give our appointment yesterday an A-.

In school, I didn't like A minuses and I don't really like them today. But I am choosing to focus on the good!

The good news is that Luke's echo looked beautiful as usual, great function and no narrowing where the angioplasty was done in the aortic arch. His blood pressures on arm and leg were perfect and his EKG was normal.

The minus was his sats. Normally, he runs in the mid-80's, 84-86% but yesterday he was holding steady at 80-82%. We've been prepared that eventually Luke's oxygen saturations will trend down, but you also are never ready for that. This very well could be from the hit Luke's lungs took from his nasty chest cold a few weeks ago. Or it could be that he's growing and his heart is having a harder time perfusing oxygen to his fingertips. We do notice it takes a little longer for his fingers to pink back up after he's been exercising or out in the cold. Maybe he was cold yesterday? Maybe it was the machine? A lot of factors can contribute to a person's sat level, and thankfully Dr. Kim did not jump at the chance to see cause for concern. Especially after the echo.

He does want us to come back in a couple of months, though, to recheck his sats. If they are low 80's, or back up to mid-80's, we will just keep plugging along. If this truly is a trend downward, and his sat's are high 70's, then it will be time to schedule a catheterization and possibly starting talking Fontan. Blegh.

I have to remind myself constantly, though, that this decision to move forward with the Fontan is not about me. It's about giving Luke the best chance possible to live the fullest life possible. If it's time to help him out by taking more workload off his heart, then I want that for him. And we will get through open-heart surgery and a hospital stay with the strength of our faith and the support of our "team".

It feels good to have a specific plan in place. I also appreciate Dr. Kim's level-headedness about Luke's care. He didn't rush or push or jump. His approach is just to watch and let Luke let us know if this is a concern or not.

Luke had put on a couple of pounds since his last appointment (he hit 40! yay!) and grown an inch since September. For that reason, we can go up to 2.5 ml's on his Enalapril, which allows us to switch to pill form and thus fatten our wallets :) We'll see how pill-swallowing goes. Should be interesting.

We talked a bit about Luke's left diaphragm plication and how that may impact the Fontan and also about the new Fontan "Y" graft that is showing some good outcomes.

Luke did a stellar job and had his new I-Spy books to look at to help keep him occupied. I just love this boy so much. And apparently, even when he sasses me or stomps away in anger, he loves us too:

I found this on the back of one of his school worksheets.

Tuesday, March 12, 2013

Cardiology tomorrow

Luke's sitting next to me on our home computer, playing on A friend from school just left a few minutes ago. As "normal" as this moment is, tomorrow morning he is missing school for a not-so-normal appointment.

It's that time again ... for all you faithful pray-ers to say another prayer and think another good thought for our boy's heart. Tomorrow will be our second appointment with Dr. Kim and we are anxious (trying hard to not to be too much so) to hear his thoughts on Luke's heart function.

Because Luke's cardiologist has taken the approach of putting off his Fontan until Luke's body lets us know it's time to schedule the surgery, each appointment feels like a huge one. Will we have "the talk"? As sad as we've been to lose our cardiologist, I am also seeing the positive of having another really smart man look at my son's heart. Two heads being better and all ...

My gut is that he won't push for surgery this summer, but the weight of that possibility is heavy. Luke has grown several inches this year, and I can tell his fingers don't pink up as quick as they used to. I'm hopeful his sats are still mid-80's and there is no talk of surgery, but only God knows.

Please pray for Luke and Dr. Kim. That as a team, we will make the best decision for Luke. If I had my way, I would keep him as far away from Children's as possible, forever and ever. But if Luke's body needs this surgery and it helps him feel even a little better, then I know that's what we need to do.

As Luke plays computer, his heart is worry-free about tomorrow. He has checked and double-checked with me that the appointment tomorrow involves no needles, so he is cool. I love that. It's kind of like that with God: As we, Luke's parents, bear the burden of his appointment tomorrow, God, our Father, longs to bear our burden for us, if we'll only let Him.

Thank you for your prayers!

Friday, March 8, 2013


In my last blog, I posted this picture of Luke, taken while we were in the ER a couple weeks ago:

This is not the norm. Luke talks very little about his "superman scar" and shows it off even less. He likes to wear his swim shirt and unless his buddies initiate shirtless play (boys, right?), he likes his shirt on.

At the basketball end-of-season ice cream celebration, Coach David spotlighted each of the eight players. David is a very close friend of ours and has been a part of Luke's story from day one. When Luke made his first basket this season, you would be hard-pressed to find anyone in that gym more proud.

I asked David to send me the gist of his spotlight of Luke and I wanted to share. Partly because Luke's reaction was so surprising to us and partly because I want to record the kind of people we have encircling us.

"When I think about Big Luke the word that comes to mind is HEART. It wasn't hard to notice that whenever Luke took the court he always played the game and ESPECIALLY defense with a lot of heart! But for those you who don't know, Luke has a special heart. Luke was born with a heart that didn't quite work like most hearts. That heart needed a little help from doctors to make it nice and strong.  Luke has had two surgeries done on his heart just after he was born. I was there at the hospital when Luke had tubes hooked up to his body for weeks and was fighting to stay strong.  I remember praying for him a lot and he was super brave.  Luke's heart is a big reason why I decided to coach this team the last couple of years. When Luke exercises, his heart has to work much harder than most kids.  When he breathes, in order to get oxygen it would be like you or me sucking air in through a narrow straw while breathing hard.  So to see him running around on the court trying his hardest with that big smile was awesome! I'll never forget during our last two games of the year Luke made his first shots of the season! One in each game!  Those shots were money and it was incredible!  I wanted to make sure to get a chance to coach this incredible kid not knowing how long he'll be able to play. And he didn't just play.....he played AWESOME! So Luke....I want to congratulate you on fighting hard every time you played (he goes into some Kung Fu Panda moves because I said "fighting"), and being such a superstar and having heart for your team!!  I love you buddy!"
During the part about the surgeries, Luke pulls the collar of his shirt down to show off his scar.

Now, I know six year olds are not the most emotionally mature and maybe he reacted a little out of embarrassment at being spotlighted, but he had never initiated attention to his scar or heart defect before this week.

I've met a lot of heart kids — in person and in blogland — and I would place Luke on the far end of the spectrum of heart defect self-awareness. Or maybe I should say self-unawareness. Some heart kids talk freely and proudly of their heart, their scars and their surgeries. They have oxygen, or g-tubes, making their differences more noticeable at a glance.

Luke? Not so much. When asked a while ago by a playmate, "What is that on your chest?" He responded with, "Oh, just a scratch." Another answer he's given is, "That's just where my heart was fixed." It's very simple to him. He knows he has had heart surgeries as a baby. He knows he sees a heart doctor. He knows he takes medicine to keep his heart strong. But until recently, the dots have not connected to make him aware that his experience is radically different from most other kids.

In the bath the other night, Luke asked me if Laney had a "superman scar". I said no. Then he asked if I had one or if Dad had one. I said no, just him. "God made your heart unique and special." He was truly saddened by this. "I don't like that I'm the only one in the family with a superman scar." It was so interesting to me that he was just putting this all together! I guess Rog and I have done a better job than we even intended to make sure Luke never felt anything other than normal.

Because it was intentional on our part, to let him come to his own conclusions about his special heart. We haven't kept it a secret from him, but he in no way knows that his heart defect is serious and complicated and has long-term ripple effects. We took to heart Dr. Stefanelli's assertion that Luke will self-regulate in these early years. Sometimes it took everything in me (and I wasn't always successful) to let him go and not stop his activity. We have held the belief that until Luke needs to know, we don't want him to know he's different.

He may not have been the quickest on the court, but he had as much fun as anyone out there.

It feels like a big line to cross for us. We have never wanted Luke to use his heart defect as a manipulation tool. But we also don't want him feeling discouraged that he isn't as fast or strong as some of his friends. And of course, as the Fontan nears, we know we will need to navigate those conversations as well.

This decision of when and how much to talk about your child's condition is of course individual to each family and I by no means feel like we have all the answers. What I do know for sure is that I love Luke with my whole heart and want him to be all the stronger for what he's been through. I want his character strengthened and his heart to trust Jesus when he faces adversity and comes up against limits. I want him to know he was knit together by God, for a purpose, for such a time as this.

Lord, may it be so. And give us the wisdom and discernment we so desperately need.