Day 2

The number of answered prayers we've witnessed the last day and a half is mind-boggling. And those prayers are sustaining us on day two, when our sweet boy has had to battle. My heart aches for him. The cry of my heart is that God is working to deepen his faith, to make good from this battle. I know He will. Prayer is not just words when you're in the midst of hard. It is everything.
 
Luke is currently sitting propped up in a chair, which was a big, scary hurdle for him. He is not happily sitting, but he's sitting. In the next hour they are planning to remove his chest tube, which is going to piss him off even more. Even though he knows it is one big step closer to the floor and then home, he is still scared. With good reason. Please continue to pray for his spirit. He is having a sad and mad day. With good reason.

The progress Luke is making is astonishing, especially because both of Luke's other open heart surgeries have been so riddled with complications and setbacks and a slow, slow pace. The nurses keep telling us that a nine-year-old body is so much more able to tolerate the anatomical and physiological changes post-heart surgery. Luke is completely off his IV tree meds, has had his arterial line removed, catheter taken out, and next his chest tube and pacer wires should come out today. The speed of his progress has us on our knees in thanksgiving.

The nurses also keep telling us that days 2 and 3 post-op are the most acute, so we are praying that after tomorrow the Luke spirit we've loved for nine years will start to shine through again. I can't wait to show him text after text and message after message of love and support for him. He is one loved little boy. Thank you.
 
The word on the street is that we may move out of the ICU and to the cardiac surgical floor tonight. That is a huge step toward home, but at the same time it's hard to leave the cocoon of the ICU. Please pray for a smooth transition and another stable night.

Pre-Op

We survived a long day at the hospital yesterday. Longer hospital days are coming soon, however, so leaving yesterday afternoon for home was like an unspoken reprieve. Our top two priorites the next 8 days are, 1) enjoy our time at home thoroughly and intentionally, and 2) keep this boy healthy. The cardiac nurse practitioner in not so many words told us it would be crazy to send Luke to school next week. She also told Luke studies are finding that iPad use during procedures dramatically decreases the child's perception of pain and discomfort.

She is his new best friend.

And maybe insurance will cover a new iPad for Luke. We have studies, Regence!

Our day consisted of vitals, EKG, a chest X-ray, a lengthy meeting with the surgeon, a blood draw, a subsequent lengthy meeting with the cardiac nurse practitioner, a break for lunch, a visit to the pharmacy to pick up an antibiotic nose gel for the week before surgery, then finally, a consult with anesthesia.

Like we told the surgeon, this heart surgery rodeo is very, very different with a nine year old. Some good differences, some bad. I love that each person we came in contact with yesterday made Luke a part of the process, spoke directly to him, and let him ask any questions he had (not surprising to anyone who knows him that he had a few). That is most definitely a good difference. We have told him repeatedly leading up to this surgery that every nurse and doctor that walks into his room has two priorities: keep Luke as comfortable as possible, and get him home as quickly as possible. I think his interaction with the staff yesterday confirmed that for Luke. I think he trusts that these doctors and nurses have his best in mind. Even when they are asking him to do something really, really hard.

Another lesson relearned yesterday: We can laugh and be silly and those two things make everything seem a little better. Good attitudes really do go a long way.

 

Here is a bit more information from our surgical consult. And for all you visual learners, these are for you:

This is not an accurate graphic of Luke's heart, but it's a good visual of the DKS procedure that was done as part of his second open-heart surgery, and a good way to visualize where the stenosis is happening. The surgeon will incise the underside of the aorta, widen it, and place a cadaver homograft patch the length of the incision. There is a tiny chance Luke would have enough pericardial tissue to use for the patch, but unlikely. The only downside to the cadaver homograft is that it can increase Luke's antibodies, which would only be an issue if he needed a heart transplant down the road. 

Here is what the repair basically looks like:

Dr. Chen told us it will be about a four hour procedure from start to finish. He will most likely come to the Cardiac ICU intubated but could be extubated within a couple of hours. The average ICU stay is two days and then he'll move to the surgical floor for the rest of his recovery.

I truly enjoyed meeting Dr. Chen. It's rare to meet a heart surgeon who is not only good, but also personable and willing to connect. We spent at least 45 minutes talking after Roger and Luke left the room (also not surprising to anyone who knows me that I had a few questions myself. See note above about Luke's prolific question-asking ability). We are in good hands.

One thing I didn't know (and that we can be specifically praying against) is the high incidence of vocal cord nerve damage (about 15%) that can occur during aorta reconstruction. The laryngeal nerve runs right behind and underneath the aortic arch:

So, we are set for November 28. We have officially begun Mission: Stay Healthy. I may or may not have crossed the line from oil lady to crazy oil lady.

I'm okay with that.

We feel surrounded by so much love and support and we could not be more thankful to walk through this with all of you.

 

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.