Not why I wanted to dust off the ol' blog

Many, many times the last two years I've put it on my want-to-do list to post an update on heart and life happenings. And then life kept happening. We continued to see Luke's cardiologist every six months since his last catheterization in 2013, continued to research, seek opinions across the country and then continued living.

Luke has been the dictionary definition of "stable" in this season of blog silence. Stable heart function, stable oxygen saturations, stable med doses. All that stability, though we never took it for granted, definitely shook our knees and hearts with the news that Luke needs open-heart surgery. The shocker was this is not the surgery we have known he'll need since I was pregnant with him.

I'll back up a little to say our second cardiologist, Dr. Kim, moved to Chicago this past summer. We were again left to decide who would care for Luke's heart. In an honest conversation with Dr. Kim, we decided to leave our beloved Tacoma clinic and move Luke's care officially up to Seattle Children's. With Luke being nine and still pre-Fontan — way out on a limb in other words — we felt right about moving his case up to a bigger center.

We met Dr. Rubio in June of this year and felt within the first minutes of meeting him and his nurse that this would be a good fit for our family. A lot was his personality, attention to detail, attention to Luke, and willingness to listen, but we couldn't ignore the fact that he trained at Children's Hospital of Atlanta, with Dr. McConnell, the same doctor I have personally spoken to three times on the phone as we've weighed the risks of delaying the Fontan. He is a leading proponent in this country to let the patient dictate when the Fontan is necessary, not hospital protocol.

At that first appointment with Dr. Rubio, we had talked about a spring catheterization, as that would have been three years since his last one. In what Roger and I figured was simply a fiscal reason, we requested his cath be bumped up to this fall. Who knew God could work even in matters of insurance? ;)

So, that brings us to October 13, and Dr. Rubio's words: "I really wish Luke hadn't surprised me today." And then, "He needs surgery sooner rather than later."

So what is his heart requiring on November 28? The root of his aorta, where, during his second open heart surgery, was connected to his pulmonary aorta, has developed scarring. This scarring down has created a narrowing, or stenosis, and his pressure gradient across the stenosis is 22 points. If a heart healthy person had that pressure gradient, they would be sent home and monitored. Surgery isn't even on the table until that gradient typically hits 50 points or more. But, of course, Luke's heart is far from normal. Even mild stenosis working against a single ventricle can have detrimental effects. It was seen through his catheterization a few weeks ago that the filling pressure of his left (and only) ventricle has jumped from 8 back in 2014 to now 16 mmHg. That means his heart is not relaxing as well as it was and there is some diastolic dysfunction happening.

The deeper you walk into the medical world, the more you learn that medicine does not equal exact science. Could we do the Fontan at the same time as the aorta reconstruction? Yes. Would some doctors argue this is what should be done? Yes. But after much (and I mean much) weighing, wrestling, and discussion between our old and new cardiologist, between us and both cardiologists, and among the 30 doctors who conferenced on his case, it was agreed that Luke does not warrant the Fontan at this time and to keep the two surgeries separate is the way to go. And here is why:

1. Luke's filling pressure and pulmonary pressures are currently elevated. This is most likely due to the stenosis, but whatever the reason, these numbers now put him in a high-risk Fontan category.
2. The theory and hope (and prayer!) is that reconstruction of the aorta will cause these numbers to go back to Luke's baseline within a year, making the Fontan recovery less risky. There is direct correlation between high pulmonary pressures and length of ICU stay, hospital stay, chest tube drainage, and even Fontan failure.
3. Most of all, it just feels incredibly unsettling to send your child into a surgery when he is a sub-optimal candidate for that surgery. We would rather have two open heart surgeries to face that are less risky than one that is high risk.

That leads us to today. We are just about two weeks away from Luke's third open-heart surgery. Luke has handled the news in kind of a mind-boggling way. How a boy of nine can absorb the news, process it, ask questions, begin to find some good in it (new iPad! Dad and Mom waiting on you hand and foot!) and continue to live life without a whole lot of anxiety, is just crazy to me. But, I kinda know his response has less to do with Luke and more to do with God. Our God who tells me, "I Am." We are clinging fast to this promise. There's a lot we don't know about this surgery and recovery, but this we know. He Is.

It's a big zoo

Two weeks after a pretty hefty heart procedure, Luke hopped on a bus with the rest of the first graders and headed to Pt. Defiance Zoo for his end-of-the-year field trip.

I knew about this field trip from the beginning of school and off and on throughout the year, I caught myself wondering, "How is this going to work? Can he walk the entire zoo? What if he can't?" In all honesty, I didn't want to be a volunteer for this trip because my experience as a parent of a heart kid can be very different from others'. It's not as easy for me to just tag along, enjoying the moment. I get caught up in thinking and analyzing and overthinking and then analyzing from a different angle.

And all of that did happen, but you know what? There were also a lot of moments I did enjoy. A lot of moments where Luke was just one of the kids and except for the trek up about fifty steps back to the bus at the end of the trip, Luke made it. He walked the entire zoo with his buddies. I could tell at one point, during the long walk to the polar bears, he was petering out a little bit. I offered him a piggy back and he looked at me like I was nuts. "None of my other friends are getting carried!" Okay then.

So when he saw all those steps back up to the bus, he looked at me and said, "Okay. I'll have that piggy back now." Knows his limits, that one. The great thing was, no one even really noticed the piggy back and definitely no one said anything. It made my mama heart feel even better when I heard a couple of the girls behind us say, "When I get home I am going to do NOTHING but sit on my couch! My legs are tiiired!"

Part of this crazy decision making process to determine when Luke's next surgery should be is a continual check-in of the question, "How is Luke's quality of life? How much does his three chambered heart impair him?"

On a day like this:

Can you find Luke?

We can rest assured that this kid is living life. And in the areas where his one ventricle doesn't allow him as much stamina as his friends, we have seen over and over his capability to adapt and compensate really, really well.

All of Luke's data, from his recent cath and MRI, his latest echo, clinical notes and surgical notes, has all been sent over to CHOP by our cardiologist. I am anxiously waiting to hear their thoughts on our boy. I can't imagine anything they say or see will cause us to move forward with the Fontan this summer, but I guess one thing you learn in this journey is that the unexpected should be expected.

While we wait, we will enjoy two and half months of SUMMER. School let out last Thursday and we have days of swimming at the lake, hanging out at daddy's camp, S'mores, neighborhood water fights and theater camp to look forward to.

I was definitely the sad one to see school end. I realize how ridiculously spoiled I was this year to have such a dear family friend teach Luke. It was a year where I never once had to worry about how well Luke was being cared for. And he knew it, too. He blossomed this year, as a student and as a leader in the classroom. The foundation Tam laid for him, a foundation of confidence, is priceless to this mama. He loves school and loves being at Dad's school. Best decision we ever made.

Second grade, here he comes!

Cath results

It's a day like Tuesday, a day where prayer was so specifically answered, that cements for me this: The God of the Bible is a God that cares about the details of my life.

... He keeps a record of my tears {Psalm 56:6}.

... He numbers every hair on my head {Luke 12:7}

... He goes before me and he follows me {Psalm 139:5}

I know I should just jump right to the details of the cath, but I couldn't not share my heart too. God was good to us on Tuesday. He is good today and He is still good if Tuesday's news would have been different.

Tuesday will be a day Roger and I can point each other to — and hopefully point others to — when doubts and fears try to steal what we know to be true. It's so simple, but it changes everything: God cares!

We have spent the last several months praying that God would be clear as we move through these medical tests with Luke ... that HE would help us make good decisions and that HE would direct our paths.

The results of Tuesday's catheterization is one more piece confirming our peace to not move forward with Luke's next open-heart surgery right now.

Ready for some answered prayer?

• Luke's cold was completely gone by Monday.
• There was so little anxiety (for Luke I should clarify) leading up to the big day. He actually said on Sunday, "I wish it were Monday because then I would be closer to my cath." Granted, his logic included his post-cath pet, but still. What a huge blessing to this mama's heart.
• Luke was safe and protected in the cath lab. Anesthesia went beautifully with the amazing Dr. Lord and Dr. Belotti got easy access through the femoral artery and jugular vein.
• The numbers were AMAZING! His Glenn pressures were 11-12 which makes him an excellent candidate for the Fontan when we decide to move forward. His filling pressure was beautiful, the squeeze and relax of his heart measured healthy. His pulmonary arteries are a nice, big size and aortic arch gradient was 10, meaning no need to balloon or stent Luke's coarctation.
• Dr. Belotti did find a pretty big collateral vessel coming off his aorta and twisting and turning a while until dumping back into his pulmonary arteries (basically a totally useless circuit). He placed two coils in the vessel, which blocks all blood flow. This went well and his late afternoon chest x-ray showed the placement to be just where Dr. B. expected.
•  NO OTHER SIGNIFICANT COLLATERALS. If Luke had been developing AVMs (arteriovenous malformations), this would most likely move us forward to the Fontan. This is actually pretty astounding and unexpected that Luke has not developed these. He had a few tiny spidery collaterals coming off his aorta, but nothing needing intervention.
• So, his recovery. A lot of prayer was said for these four to six hours post-cath. I had one friend text me that she was praying that Luke would come out of anesthesia completely differently than he ever had. It was so clearly God because our experience on Tuesday was so radically different. For the first time ever, Luke slept for two hours after his procedure. He slept through that cranky, irrational, agitated stage. He was able to nod or shake his head and take a sip of apple juice, but then he would go right back to a deep sleep. About two hours into his recovery, he started opening his eyes and asking for apple juice. No thrashing, no crying, no us having to hold his legs down to protect his groin site. It's been a few days and I am still a little stunned with how calm he was. Luke's first grade teacher (and our dear, dear friend) came by to bring us snacks and treats and Luke two new DVDs since we planned on staying the night. He loved having her there, talking about school friends and reading group and the upcoming Flag Day concert (BIG deal around these parts ... Luke is the Bald Eagle in the play). Before we knew it, he was able to raise his bed a little more and he ordered a lunch of chicken nuggets. He played a little on the iPad and we laughed through some Mad Libs.
• After Dr. Belotti saw his chest X-ray, he told us he was comfortable letting us go home if we were. I'm pretty sure our anesthesiologist championed this idea for us. This guy is awesome. He even called later that night to check on Luke and to tell us again that he was proud of us for seeking second opinions in Luke's case. So after a second dose of IV antibiotics and the removal of all the leads, wound tape, and IV, we were on our way home by 6pm! Obviously, we would have survived spending one night in the hospital, but to not have to was a huge gift. I'll take my bed any day.

It's Sunday morning now and Luke says he's 98% back to normal :) I'd say. He played outside with the neighbor kids from noon until bedtime last night, coming in only for pizza. He's back to school and except for a little post-cath heartburn, his recovery was as smooth as can be.

We are beyond thankful. Thank you for praying for us, for checking in on us, for your texts and well-wishes. Beyond thankful.

MRI ... check; stress test ... canceled; catheterization ... SOON

We were supposed to have Luke's exercise test on Monday but he decided to not only get a cold a week before (which would totally skew the results since being sick impacts his exercise tolerance), but also to start throwing up Saturday night. I'm okay with putting that test on hold. We have his MRI results and after his catheterization on May 27, we can send all of that information across the country to the Children's Hospital of Philadelphia. We are anxious to hear what they have to say.

This has been such an interesting process the past few months, really diving in and figuring out if continuing to delay Luke's Fontan is the right thing to do.What's become clear is that the answer, depending on who you talk to, is not at all clear. That said, I do feel like each baby step we've taken in this process has confirmed that for Luke, waiting is where we're supposed to be. And we definitely feel peaceful about taking a summer 2014 Fontan off the table.

I'll back up a little to a little website called Facebook. I'll be the first to say our Facebook culture has it's flaws, but one thing it does really well is connect a group of people (in my case, heart moms) who would be much less powerful on their own. There is great power in sharing knowledge, sharing tears (happy and sad), and building on each other's passion. I don't know all the specifics, but after one family's local hospital refused to operate on a little boy with Hypoplastic Left Heart Syndrome, and after the family's insurance refused to pay for treatment at a hospital that WOULD attempt an operation, this family didn't give up. The mom turned to social media for help and within days, Medicaid approved a life flight to Boston Children's Hospital and the little boy now has a chance to live. That is powerful.

My Facebook story isn't quite as dramatic, but for my family, still profound. It was through a Facebook connection that I got to talk on the phone with Dr. McConnell, from the Sibley Heart Center in Atlanta. Like Dr. Stefanelli, he feels like delaying the Fontan — for the right cases — is the right path. He believes that every year he can buy these kids is a year closer to a better solution. This is a hotly debated topic among pediatric cardiologists and I don't want this post to be about one position being right and the other wrong, but Dr. McConnell's rationale sits well with me, for Luke. We are talking a major (MAJOR!) open-heart surgery for a young child. We are talking about a new physiology, while certainly beneficial in some ways, also starts a ticking clock on the health of that child's liver. Not to mention other potential nasty conditions that only happen with the new Fontan physiology. When you hold those factors in one hand and see Luke running off to recess with his first grade buddies in the other, waiting just makes sense for our family.

But here's where we want to be smart. We don't want to delay this third stage surgery just because WE want to delay this third stage surgery. We want to be smart and do our due diligence in this process.

Luke, happy as a little clam with the help of a little Versed pre-MRI.

Which is where all this testing comes in. Luke had his cardiac MRI back in late March and we got some good information from that, confirming Luke's excellent heart function (his ejection fraction is within "NORMAL" range. As in, normal normal. Wow.) They were able to get good measurements and map his vascular system. They did see what is most likely a collateral vessel on his right side which is the main reason we are moving forward with also doing a catheterization. In the cath lab, they can test and see if Luke is actually using that vessel (if it is "diffuse") and if so, they will coil that inefficient vessel. The metal coil in the vessel causes a blood clot to form and close the vessel. Over time, tissue grows around the coil, forming a permanent seal.

I know, right?

So we'll be heading to the cath lab this Tuesday morning to see what we can see. At the minimum, they will place a catheter both through his femoral artery (to access his left ventricle) and also the internal jugular vein in his neck to test his pulmonary vascular resistance. This data determines whether Luke is a good candidate for the Fontan. They will also measure the pressures in his ventricle.

If all they decide to do is collect data, Luke should be out in recovery within an hour or hour and a half, and we will get to go home after his 4 hour recovery (they need the kids to lie as still as possible for 4 hours to prevent clotting issues in the access sites. Yuck. Borrowing an iPad for this portion of the day.)

If they decide to coil any collaterals (there could be multiple, we just don't know), we will need to stay overnight and Luke will receive three mega doses of IV antibiotics before discharge. They will also do a chest x-ray before discharge to make sure the coil is where it should be.

Finally, Dr. B. will measure the gradient pressures above and below Luke's narrowing in his aorta. Luke had this narrowing ballooned back in 2010 and it has stayed pretty open since. If there is moderate narrowing, Dr. B. will do another ballooning. If it is significantly narrowed (very unlikely), he will place a stent to hold it open.

So a lot of possible outcomes on Tuesday. We are prayerful and hopeful that no interventions will be needed and we will all sleep in our own beds that night.

Thankfully, with the anticipation of getting a post-cath pet turtle (the things you do, right?!), Luke's spirits have been really good going into next week. I am so thankful for that. He doesn't know he may have to spend the night yet, since we don't want him stewing on something that may not even happen.

If you'd like to pray for our family, here are some specific requests:

1.  Luke's nose is a little stuffy right now. We need wisdom on whether or not to postpone in the next couple of days. Dr. B. is comfortable moving forward with an upper respiratory bug, but since this is an elective procedure, we would love it if Luke were 100% healthy. We don't want any unnecessary risks!
2. Please pray for the skill and steadiness of Dr. B.'s hands. This is a fairly straight-forward procedure, but goodness, it is a catheter entering Luke's heart! Please pray that Dr. B. would have clarity on what, if any, interventions are needed.
3. Pray for mom and dad's anxiety to be calmed as the long weekend is ahead of us. It helps so much to have Luke not too stressed about the whole thing. For my little worry-wart, this is a huge blessing.

Phew. That's a lot to digest. Thank you for being a part of Luke's "team". He is one lucky boy.

It's really not my job, as much as I think I want it

It's become clear to me that jumping rope is pretty popular in the first grade. It's happening at recess, in P.E., and a jump rope club is starting up on Thursday mornings.

Last weekend, my son, never one to be left out of social goings-on, decided we needed to buy a small rope so he could practice at home. My husband, ever the willing, found a short rope in our garage and spent 20 or 30 minutes with Luke, showing him the ropes (yes, intended "pun"ishment).

I adore my son's determination. It can be such a thorn in our sides sometimes, this strong will and opinion, but in reflection, it has served him so well. This kid who has to battle a bit more than most, to fight against his physiology, he continues to amaze us in his tenacity to keep up with his friends and do what he decides he wants to do.

Where was I during this half an hour? Not in the same room. I had to admit to myself (and now to blogland) that it is hard for me to watch Luke battle physically. To see his blue fingertips, his breathing heavier than the norm, to watch him battle what doesn't come easily to him.

Many, many heart kids have to battle gross or fine motor delays simply because of the amount of time spent in a hospital crib. I have read that one day in the hospital equals three developmental days. In that equation, Luke has lost 198 development days, over half a year. We noticed it in the fact that he didn't crawl until 10 months, or walk until 17 months. He didn't walk up the stairs one foot per step until he was five.

Now, I am not bemoaning our experience. Luke has done exceptionally well and never even qualified for OT or PT. I am thankful his body has adapted to his heart defect as well as it has.

But, he does have to work a little harder to learn large motor skills. Pedaling, climbing, monkey bars, skipping, and now jumping rope.

He worked hard last Saturday. He can get one rotation, sometimes two rotations in a row. Roger pumped up his tenacity and desire, even if the skill isn't quite there yet.

After their practice session, I asked Rog how it went. He said something that will hopefully change my attitude for a long, long time.

I shared with him my little pity party I was throwing, telling him that it's hard for me to watch Luke battle and that I wish he didn't have to.

You know what he said? "Jess, in my mind, the fact that he has to battle is such a good thing. I'm thankful he has to battle."

Well.

That is one way to look at it.

I wish that was my natural bent. But a friend reminded me, "Jesse, you are his mom. It's natural for you to want to rescue him."

She nailed it. I want to rescue my son. From discomfort. From embarrassment. From discouragement. And I can't.

And if I did all I could to rescue him, I wouldn't be a very good mom. When it comes right down to it, that's not my job. I don't want Luke or Laney to grow up looking to me for rescuing.

I want them on their knees, looking up.

I do think it's natural for us to resist trials. Naturally, we all want those sweet seasons where we're not being tested, when life is smooth sailing. But if I say I want my children (and myself!) to be dependent on a trustworthy, ever-present, always-good God, then I need to let go of trying to be their savior. Only One can save. And I do not want to stand in the way of His work.