Sunday, June 22, 2014

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!

Sunday, June 1, 2014

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.