December 5th, 2019

We started the day late for everything. This has always been my truth. I am not a timely person. But I like to think that if I'm early everywhere that means there's a lot of time in my life that I'm not using to its full potential. So please know that if I'm late, that means I filled my day with important people and tasks...but also sometimes, I just don't have it together. Today, we just didn't have it together. Between an extended conference call (Dan) and an opinionated toddler (Louis) we needed to shuffle our schedule so we weren't late for everything. We decided we would head to the hospital early and find coffee and a toy surprise and start our full day of appointments on the right foot.

While waiting for my coffee, Louis was enjoying some milk and chocolate cake pop. My coffee order came up and I forgot to ask them to skip the whip cream. So I asked Louis for a finger and gave him a scoop of whip cream- one of his favorite treats. He inhaled it-literally. And proceeded to gag and cough until he threw up his breakfast into my left hand. In a panic, I fully assessed the situation and was able to pour (yeah I know) the puke into the cookie sleeve the barista gave the cake pop in, and then used the baby wipes from my backpack/purse to clean my hands and Louis' face, without calling attention to us! No one noticed. We headed to the bathroom to wash our hands and then to the elevator to meet Dan at the lab for a blood draw. Louis loves the elevator. He pressed the UP button and we waited for one of four elevators to open. To his delight, the one right in front of him opened and he jumped on with a pile of other nurses and hospital staff. He ran to the row of buttons and said, "hmm let me see." I told him we needed the bridge and to press number 3. As the door closed he jammed the nearest button to his hands and it was the emergency call button, stopping the elevator and promptly calling 911! 

“Is there a Cancel button?! Stop! Omg it was an accident I'm so sorry!” 

We get off at our stop with applause and a bow and head to meet Dan. There's a child with a barf bag in the waiting room of the lab so we opt to return later. We take a lap around the toy shop and ohhhh and ahhh over all the great stuff and then head up to our appointment. 

We finally check in at the heart clinic. We are sitting in the waiting room and I start to feel like I finally have it together. I packed snacks, a change of clothes, toys, and medications. I am ready for anything. A nice nurse calls out for Louis and he is immediately defiant when he is usually agreeable. To my horror, he lays across the magnet table in the waiting room yelling, “I don’t want to!” (we steer clear of magnets for at a certain strength, they interfere with his pacemaker settings). I have learned it’s best if we tell him each step, rather than unload the entire morning of events. The nurse offers stickers. He doesn’t budge. I get down on his level and say something like, “It’s hard to do things we don’t want to do. But right now, all you have to do is jump onto that biiiig scale and then stand tall against the wall with your shoes off. Do you want me to take my shoes off too?” He takes my hand and agrees. This goes smoothly and we are brought down another hallway past a bookshelf of communal toys. Louis picks one out to bring to the private room. We aren’t waiting long as the nurse returns with an EKG, blood pressure, and pulse oxygen machine. Louis lets her put stickers on his belly and he sits still through these tests. #Blessed Every result looks “normal” to me but humbly, I accept what I don’t know and wait for the doctor to give that report.
We meet with the electrophysiologist first. It’s been a year since we’ve seen him. He is so kind and sweet to Louis. He plays with Louis, lifting him up and down peeking into a mirror on the wall. We are ready to read his pacemaker so Louis climbs into my lap and asks for a snack. I am ready with pomegranate seeds, one of his favorites. I am holding the bowl of seeds and the pacemaker transmitter AND Louis. With one swift slap, Louis peppers the pomegranate seeds across the floor. Dr Chris tells me not to worry about it but how can I leave it? He is rolling over tiny red seeds that pop under pressure and squeeze red juice further across the floor. He insists I stop trying to clean them up and grabs a nurse to take us to a different room. Thanks, Dr Chris. 

We talk about his pacemaker for a while and Dr Chris adjusts a few things, most notably- the pacemakers resting heart rate (lowering his threshold). This changes the battery life- prolonging replacement. We wish Dr Chris a happy holiday and the nurse returns to escort us to a different room for an echocardiogram (sonogram of the heart). There is a TV in this room and Louis requests CARS, but he also insists he sit in my lap. So I pony up to the patient table and situate a pillow under my head. I help Louis take off his shirt and lay him in my lap. The sonographer is a student from GVSU and her instructor will be checking in with us soon. This takes longer than usual, so our nurse navigator and cardiologist meet us in the echo room to go over all the test results (rather than moving us back to a clinic room). 

Our cardiologist comes in and says, “Are you ready for that ejection fraction?” 

I had a bit of an internal panic. 

We had been so focused on improving the squeeze of his heart this past year and had seen some minor  improvements but overall he was still in heart failure. The last visit showed no change, so it felt like a sign that 40% ejection fraction was his new normal. They say you see the most change in ejection fraction within the first year from the cardiac event (so we are counting from August 2018 when his heart stopped during his heart cath). It’s December 2019. 

She says it again and announces, “50%!” 

I had no reaction. I sincerely had not considered that we would see an increase in function.

Normal/average heart function is between 50-70%

Louis’ heart function is...normal. 

It’s normal. 

His initial palliative repair surgery (and subsequent coronary resection) are holding well. His valves are growing properly, with some leaking (as expected since we redid all of his plumbing). Someday those mild leaks may become severe. Someday his function might lower and we will be talking further about cardiomyopathy, and involving the heart failure team at the U of M hospital. Someday, his pacemaker will need replacing and updating. Someday he will need another heart catheterization, and another hospital admission. But not today. 

Today, we get to play cars with our cousins. Today, we get to take a family nap. Today, we get to stay up late and watch ball hoop. And tomorrow… tomorrow we get to swim in the joy of being Louis’ parents, and continue watching him grow and learn and thrive. It’s such a special relationship with our care team. I am still angry that we even need so many specialists, but I am also so humbly grateful for their care. I would not be who I am to Louis without them. What a special special gift they have given me; a healthy child-my son, and a woman who can advocate like a mother- myself.