Step by baby step

Okay.

We had a cardiology appointment a couple of weeks ago and subsequently a few more are now penciled in on the calendar.

His appointment was on a Wednesday, and later that evening we had a few minutes until we had to leave for Woodland's Math & Science night. Luke really wanted to go, but I'm still not convinced it was math and science drawing him. I'm thinking the free pizza and chance to hang out with buddies was his motivation. In those short minutes, I laid down on the couch with Laney, feeling just wiped. I am always surprised (you'd think I'd have learned by now) with how much cardiology appointments take out of me. The countdown leading up, the restless sleep the night before, the anxiety during each test, the emotional let down after (even if the news isn't bad). I honestly felt like I should be presented with mom-of-the-year award when I dragged myself off the couch and out into the pouring rain to take Luke to school. I was wiped.

But the news was good and the conversation continues fruitfully on. I feel like we have some next steps in place to help us make this ever-looming decision of when (if?) the Fontan should happen. It is a recurring battle in my brain, this weighing of risk to benefit of this next surgery. I am prayerful and confident that God will lead us to make the best decision for Luke.

That said, we are scheduling a few tests in what I'm calling this "research-gathering" season we're living in.

Although a little on the young side, Dr. Kim would like to try and run a stress test on Luke. This could tell us more accurately how well his body is tolerating exercise, his VO2 output, how low his sats get when exercising, and how fast he recovers.

The second test happened this morning. We had an ultrasound to look more closely at Luke's diaphragm function. Most likely during his first surgery at five weeks old, his phrenic nerve was nicked, paralyzing his left diaphragm. The phrenic nerve originates in the neck and passes down between the lung and heart to reach the diaphragm. There are two, a right and a left, and Luke's left was damaged. When we discovered the paralysis, we were at Seattle Children's, post-Glenn, and Luke was having trouble getting his sats up into the 80's where they expected them. He was running low to mid-70's. They could have left the paralyzed diaphragm alone, but because of the damage, that diaphragm was actually working paradoxically, or opposite of how it should have been. So instead of contracting during inhalation, it was expanding and vice versa. This was negatively affecting Luke's lung capacity and oxygenation.

Because a non-functioning diaphragm is not ideal for Luke's next surgery, the Fontan, Dr. Kim wanted to see what that left side was up to, if any movement had been recovered.

The radiologist couldn't tell us a whole lot, but there was definite movement happening today. Not as strong as the right side, but movement nonetheless. We'll see how Dr. Kim interprets this info, and what this could mean for Luke, if anything. I'm pretty sure they don't do plication reversals, but maybe they do? Or maybe a kind-of functioning diaphragm is better than nothing?

Thirdly, we are doing a cardiac MRI to get a deeper understanding of Luke's heart anatomy and function. An MRI is a non-invasive way to get more information than an echocardiogram can give. The MRI will create three-dimensional images of complex heart defects and measure how well the heart is pumping blood. The only bad part will be the anesthesia. This, along with the results of the other tests, his latest echo, and his surgical notes will all be sent to the Children's Hospital of Philadelphia. We are hopeful they will weigh in on Luke's unique case and give us good wisdom in our decision process.

Writing all of this post makes me realize how thankful I am that we have so many doctors who care about not just Luke, but all medically-fragile kids. When I talked to a cardiac nurse at CHoP, I was blown away by her receptivity to looking at Luke's case and her compassion for a family she's never met, living across the country.

And how about this for a date on our calendar? MAUI for Spring Break!! We got to go two Christmas's ago, but this little lady is itching to get back there. And huge blessing, we'll get to see our beloved Dr. Stefanelli while we're there. Poor guy has to do bi-monthly outreach clinics on Maui, so he scheduled his for the week we're there. CANNOT wait. We feel so blessed that he's stayed a part of Luke's care and we can't wait to see him and for him to see Luke in person.

Now we just need to get Laney to practice wearing a swimsuit, since I'm pretty sure my loves-to-be-nakey and hates-anything-restrictive girl won't be allowed on the beaches of Maui sans clothes.

Theoretics

The Fontan conversation picked up again these past couple of weeks. Between our old cardiologist and us; between us as Luke's mom and dad; between us and God.

The last we talked with Dr. S, back in September after Luke's cardiology appointment, the "plan" was just to continue to hold off on this third stage surgery indefinitely. To continue to watch and wait for Luke to determine the timing. It was agreed that the risks didn't outweigh the benefits at this time.

There are benefits to finishing the Fontan circulation. No pediatric cardiologist would argue with the potential benefits. You are taking volume load off the heart, you are improving the child's cyanosis, often giving the patient near-normal oxygen saturations, and in most cases you are increasing the child's exercise tolerance. No one would argue with the fact that there are risks to this new circulation as well: The Fontan could fail, a patient could develop long-term complications such as Protein-Losing Enteropy (a nasty, nasty condition) or heart arrythmias, and most talked about right now, the potential damage to the liver with this new circulation. There are single ventricle patients in their 20's and 30's that have such severe cirrhosis of their liver that they require a heart and liver transplant.

So here's our impossible situation: The theoretical benefits to Luke, if all goes well, would be great. I'd love to see his exercise tolerance improve, and would love to not have to worry so much about his sats getting too low, especially when he's sick. The theoretical risks to Luke, if things don't go well and his body doesn't like his new circulation, are really really scary to a mama's heart.

That's a lot of theoretics. Dr. S. will be the first one to tell you: There is no easy answer. Luke's case is so tricky in the fact that he is seven, that his sats have stayed in the mid-80's, and his heart function and energy have stayed really good.

But you want to know what's not theoretical?

God's great love and good plan for our son.

In as much as we've been going around and around on this topic the last three weeks (which is good, by the way, and a necessary part of this process), we've had to stop and remind ourselves what God says, "If you need wisdom — (yes! over here!) — ask our generous God, and he will give it to you. He will not rebuke you for asking." —James 1:5

Or how about this promise? "Ask and it will be given to you ..."

God is not about making our path muddy, or our decision impossible. And He definitely doesn't want us to make this decision in our own limited knowledge. Yes, he has given us smart people to weigh in, and we're in the process of adding another smart brain from the Children's Hospital of Philadelphia to help us make this decision. But even Dr. Rychik's vast knowledge of all things Fontan is nothing compared to the wisdom of God. Nothing.

That is what we cling to as we walk forward through this situation that feels like has no right answer. It's scary because we want the best for Luke, but I tell myself a million times a day that God does too. Even more than me. Because His best is better than my best, any day of the week.

Another biggie conversation

Thursdays are the craziest day of the week for our family. At the same time Luke and Roger are heading off to school, I take Laney down to her sitter's house so I can go into the World Vision office for the day. After school, my friend Erica picks up Luke and he hangs out with his buddy Marcus until the hubby picks him up around 4:45. At the same time, I'm picking up Laney and then finally we all converge at home for the night. Phew.

As soon as Laney and I walked in the door a few Thursdays ago, Rog told me Luke got a pass to spend his second recess in dad's classroom. The story unfolded that Luke told the recess duty that he just couldn't keep up with his friends today while they were all playing football. Mr. Chris, the duty, asked him if he wanted to go hang out with his dad for the remainder of the recess.

It was time for another sit-down conversation with Luke about his miracle heart.

The conversation went a little like this:

Luke: "I don't understand why I can't run as fast as my friends when we play football."

Dad: "Do you remember when we talked about how God made your heart? And how it's different than a lot of other kids' hearts?"

Mom: "Do you remember what a heart looks like? How it has four different sections that have different jobs?"

Luke, blowing us away: "Yeah. I know that I have this one (pointing to top right) and this one (pointing to top left) but I think I'm missing this one down here."

Mom: "Exactly. Those sections are called chambers. Most people have four chambers in their heart but you only have three. You are missing your right bottom chamber."

Luke: "But why does that make me not run as fast?"

We explained a little about oxygen levels, how your muscles need a lot of oxygen to move, and how his one ventricle has to work harder to pump because it's doing two jobs instead of one.

Dad: "Do you realize, Luke, that the fact that you are playing football at all at recess is a big deal? Your heart is superman strong for only having three chambers. Do you feel like you aren't keeping up during other times, like playing with your friends at home, or P.E.?"

This is where you can relax knowing his confidence is intact ...

Luke: "Oh, I totally keep up in P.E."

We explained that playing football at recess is harder because the field is so big and that you have to run a lot farther when you play outside. We told him he could find a different activity at recess, but he didn't love that idea since "all his friends play football". So we told him he'll just have to figure out a way he can play even if he's feeling like he's not running as fast or far. Or if he's not getting the ball. But ultimately, he's going to have to decide. As much as we'd like to, as much as we'd do anything we could to, we can't fix this problem for him and we definitely can't make it go away.

He asked, "Is it okay that I told the duty?"

Dad: "Yep. Mr. Chris already knows about your heart. All the adults at your school know about you."

"All of them? Does Miss Culver know? Mrs. Brumbaugh? Mrs. Miller?"

Dad: "Yep, they all know because when you were born and had your surgeries, Daddy had to take a lot of time off and so they knew about your heart. A lot of them even prayed for you."

Luke: "Do my friends know?"

Mom: "Not unless you tell them. That's going to be up to you."

Mom: "Do you know what jealousy means, Luke?"

Luke: "Yeah, like when you are sad because your friend has something and you want it too."

Mom: "There might be times when you feel a little jealous of your friends because they can run faster, but your job is to remember that God gave each of us different gifts. Not everyone can read as well as you, so maybe they feel a little jealous about that."

Dad: "I have three boys in my class, that just today, they struggled with an art project. Now they can catch a football really well, but art is really hard for them. You might feel bummed from time to time that your heart is different, but faith is trusting that God gave you this heart because he's got a big plan for you. You have to remember how many people have been blessed by your life already. And you're six!"

Luke: "Did Miss Culver come to the hospital to visit me? Mom, can I have more pizza?"

And that was pretty much the extent of the conversation. It was really good. I thank the Lord that He gave Luke a confident spirit so that he can see how many gifts he has been given. I pray that stays with him. I also pray so hard that he would never get to a point where discouragement causes him to stop trying.

Since then, we haven't heard any more rumblings about being discouraged at recess, and just yesterday, he came home filthy because he was playing football. So we keep pressing on, conversing with him as he leads.

Part of the above conversation also included talk about how karate might be a really good sport for Luke since it's not as much running as football. Luke has been begging to take karate for months, and this Tuesday was his first class:

I think he got a kick out of it.

So sorry :)

I hope this ends up being a good fit for him. He's a little bummed he's not playing basketball this year like he has the last two years. Maybe after the his next surgery we can revisit basketball, I don't know. For now, he's excited about karate so we'll see where that takes us. And we'll wait to see the unfolding of God's plan for our sweet boy.

Decisions, decisions

Clearly it's not Sophie's choice ... but every time I leave Luke's most recent cardiology appointment, I feel myself shouldering more of a burden for the decision of when to do the Fontan, his next open-heart surgery. It's a decision that has no perfect answer. When you are talking about putting your child through major, major surgery, it would be really, really nice for someone to tell you, "Here you go. Here is the perfect plan for an optimal outcome."

But that's not where we are. And I'm pretty sure that's by God's design. Because if you are given the full picture, why would you need Him? I am overwhelmed by this verse today:

"Now if any of you lacks wisdom, he should ask God, who gives to everyone generously without a rebuke, and it will be given to him." —James 1:5

If it read, "Now if any of you lacks wisdom, raise your hand", you would see me flailing my arm high in the air. We see so little of the picture and yet we want so much for Luke to be his healthiest. That is why I am overwhelmed with gratitude that God promises He will give us wisdom when we ask. I read and ask questions and make myself crazy trying to decide (in myself) when the time is right for Luke to have the Fontan. There are so many variables. Here is just a snapshot of the list that swirls through my head at times:

Pros: Likely improved exercise tolerance More normal oxygen saturations Possible growth spurt

Cons: It's open heart surgery, including time on bypass. Open heart surgery can mean a long hospital recovery Lots of kids experience emotional trauma and behavioral regressions that last for weeks/months post-surgery Research is pointing to long-term linkage between the Fontan circulation and liver damage. The Fontan could fail and need to be taken down. One of Luke's diaphragms is plicated (surgically stitched down) because it was paralyzed during his first surgery. There is some data that shows Fontan hemodynamics are not optimal with a plicated diaphragm.

So, what do you do? Part of me thinks, if the Fontan can give Luke any benefit, isn't it worth it? But then another part of me thinks, Luke is doing well; he is thriving in school, and we aren't seeing any negative impact to 85% oxygen saturations... Do you fix something that's not broken?

I told another heart mom the other day that one of my biggest fears is that we move forward with the Fontan, see a big difference in Luke, then wish we would have done it sooner. She told me in a gentle, loving way that that was crazy talk. We can only make the best decision with the information we are given.

We walked out of our cardiology appointment Wednesday with no more clarity as to when Luke will have the Fontan. Of course, our prominent emotion was gratitude. His echo showed fantastic heart function and squeeze and no narrowing in the aorta, where Dr. Stefanelli ballooned it three years ago. Many kids after an angioplasty need another before they are old enough for a stent. Thankfully, Luke's aorta has stayed wide open. Also, his sats were back up from June to 85% ... and with a stuffy nose to boot! He had grown an inch and gained a pound and a half since six months prior, which is good growth for him. Overall, everything looked good. Really good.

Dr. Kim wants us to come back in four months for a sat check and then six months for another full work-up. There was not even discussion about an upcoming surgery date. It was a "keep on keepin' on" conversation.

I don't have the answers. Dr. Kim doesn't have all the answers. What we have is a boy who is doing exceptionally well with the unique heart he was given and a God whose promise I will cling to:

He knows the future and He will give us direction as we need it.

That will have to be enough. We will keep on keepin' on, eating donuts and playing Wii boxing like our lives depended on it.

"I really scared"

Well.

There He goes again, taking my worries and my "what-ifs" and throwing them out the window. How many times on this blog alone have I gone through the process of worry, pray, worry, wait, let go, take it back, worry some more, watch God do His thing, apologize for my lack of faith, and finally, thank God He is in control and not me.

I think this is why God tells his people to "Write these commandments that I’ve given you today on your hearts. Get them inside of you and then get them inside your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning to when you fall into bed at night. Tie them on your hands and foreheads as a reminder; inscribe them on the doorposts of your homes and on your city gates."

We have to know his words and promises to shorten the time between worry and trust. I'm not sure I'll ever be one to say, "Oh, I don't struggle with worry. Not even a little." But I do believe the more I recall God's faithfulness, the easier it will be to hurdle my anxiety and rest in His goodness.

In His goodness, He gently reminds me: 

"Do you not trust how much I love this child?"

My biggest worry heading into first grade was how Luke would transition to full-day school. I could never have imagined a transition so smooth. He has blown my socks off, even wanting to wait for the neighborhood bus to play with his friends as soon as we get home.

There have been no morning tears, no afternoon meltdowns (on Luke or his mama's part).

I have to interject on myself — I wrote that above sentence about one day too early. We had a major meltdown Wednesday after school. It was a doozy, but it was over quickly and he was ready to go again.

This is Luke's teacher, Ms. Culver. She exudes joy and love and is one of the most thoughtful people I know. She and my husband have taught together for over 20 years and my heart fills with joy when I think about Luke in her care each school day.

Here is Luke with Daddy, Ms. Culver and "Uncle Alan". Alan and Roger have team-taught for 23 years, with a retractable wall between them, open a majority of the time. Every year, these three super-teachers have taken a first day of school picture, and Luke got to join in this year.

How lucky is he?!

 

Lately, my little miss has been scared of her shadow, along with just about everything else. Any noise made she thinks is a monster and she needs two lamps on in her room to sleep. "I really, really scared, Mama."

You know what I tell her? It's exactly what God tells ME when I'm really, really scared: "I am with your always. I am bigger than your fears."

I so desire Laney to know deep in her heart that God's love casts out fear; that she can rest in His arms because He is faithful.

Even at two, we develop these fears that want to distract and distance us from God. If Satan can get us to focus on what we're afraid of, then we can't possibly focus on God. What an example Mary has been to me this week, especially as we gear up for Luke's cardiology appointment next Wednesday.

An angel comes to her (crazy in itself!) and tells her that she has been chosen to carry God's own son.

"But how?" she asks. Many of us wouldn't have even stuck around to ask this very logical question. But she asks and receives an answer from the angel that would terrify me:

"The Holy Spirit will come upon you,
    the power of the Highest hover over you;
Therefore, the child you bring to birth
    will be called Holy, Son of God."

What would this mean for Mary? Her and Joseph's reputation would be ruined. An unwed pregnant woman in those days could be stoned for her indiscretion. She would lose friends, family and eventually, her son.

Here is where her example blows my socks off. Without hesitation, she says yes. For her, the joy of obedience far outweighed the negative ripples that would come. The distance between her question of "how?" and her obedience was short. Mine is not that short, but I'm working on it and practicing trust this week as we near Luke's appointment.

I could dance around and around with all the possible outcomes of this appointment and still, where would that leave me? With aching feet and no more control than I started out with. God is so good to use my daughter's fear right now to speak to my heart. At (almost!) 35, I am having to learn the same lesson as her. And He is so gracious to be patient with me.