November 14, 2016

Today was a good day. The last few days have been long and hard. Louis was put on the bypass machine (ECMO). Don't google it. The google definition is scary. Let me tell you it's specific purpose in our case. Louis' heart had a lot of stress this week so to help him rest and heal better, they used the ECMO to oxygenate his blood for him. This allowed both his heart and lungs to rest and recharge after a busy week of invasive procedures (though, his lungs are in great shape and we aren't concerned with their ability to get oxygen to his blood). 

Today, after several days of rest, Louis' team decided to take him off of the ECMO. To do this, they had to remove the tubes (decannulate) that are drawing blood to and from his heart. This procedure was done in his room and he has been doing very well. 

Louis' next step is going to be to address the arrhythmia, or irregular heart rhythm, that landed us here in the first place. That's when the top part of the heart squeezes more than the bottom part of the heart fills (sometimes called heart block). The doctors will continue to monitor his heart function over the next few days and decide what their course of action will be. This could be a temporary pacer, a permanent pacer- temporarily, or medications. We won't know until we know. 

What we have learned through all of this is that medicine is a very very delicate balance of the body and each individuals response to stress. There is no formulaic order in resolving Louis' heart troubles. It all takes time. It takes a lot of time and observation and gentle tweaking of medication and intervention. While I am relieved to see familiar faces in the PICU, and to be sharing our days with nurses who have become extensions of our family, I would much rather be running into them at the grocery store, or the children's museum, or intentionally grabbing a cup of coffee with them. 

My baby is resilient and strong and powerful. I put a quote on his door, right under his "Louis' Office" sign. It reads,

Do not pray for easy lives, pray to be stronger people. Do not pray for tasks equal to your powers; pray for powers equal to your tasks. - Father Solanus Casey

Just imagine how capable he is based on what he has been through so far, so powerful. 

I also put an E.E.Cummings poem up in his room: 

I carry your heart with me (I carry it in
my heart) I am never without it (anywhere
I go you go, my dear; and whatever is done
by only me is your doing, my darling)
I fear no fate (for you are my fate,my sweet)

I want no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

Here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

I carry your heart (I carry it in my heart)

I feel this, for Louis, rather profoundly. One of Louis' doctors saw this poem written on the wall in his room and he exclaimed, "That's my favorite poem! We had it on the programs at our wedding. You have to hear the song by Michael Hedges!"  And then he got out his phone and showed it to us on YouTube. I swear, we all had tears in our eyes. Then he walked over to our nurse, and gave her a side hug. Earlier this week I had asked her what brought her to becoming a medical professional and she told us she had cancer in high school and was treated at Helen DeVos and she wanted to be a part of what they gave her. 

Even though I hate hate hate being here in this way, it feels like we are exactly where we need to be, with a team of people (myself included) hand-picked to help him through his toughest days.

So, today was a good day.