Tuesday, February 18, 2014

Step by baby step


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.