Roller Coasters Used to Be Fun

All too many times this journey has been referred to as a roller coaster. I think I hear that every single day at some point or another. After thinking about it for a while it doesn't really make sense, does it? We choose to buy a ticket to the amusement park, to get in line, strap in and take the ride. There is a general assumption that we are safely buckled to our seat, that we will survive the ride. We watch others laugh with delight and can see the ups and downs as onlookers at the park. This, this is not that. Yes, there are ups and downs but we can't see them coming. This is different. There is no anticipation of the highs and lows on this ride. They hit you when you least expect it and you definitely can't see them coming or prepare. I don't get to wear a seat belt and I don't ever get to get off.

The last two weeks have been excruciating as I watch my son deteriorate. He went from a happy baby doing relatively normal baby things (within reason for one on life support and confined to a hospital bed of course) to a highly sedated, intubated and sad child who has restricted movement. I am hoping we are coming around to some sort of stabilization now but I can't see the ups and downs in front of me so it's impossible to know what is in store for us.

Finn's blood infection panels are now five days negative. That doesn't mean that the infection is gone, but at least we know the antibiotics are working. He has had to remain intubated because his lungs will not clear. If it's not the right it's the left. There are some thick, clear secretions that we can't seem to get rid of. Because of the ET tube we have to keep him sedated which means a lot less playful awake time. Even with him being sedated he has managed to move his ECMO cannulas and they had to be repositioned, again. Yesterday our team took him down to the OR and under Dr. Dearani's watchful eye they were fixed. Going into the surgery everyone was nervous. The vessels that his cannulas are placed in are thin and fragile. They can become extremely macerated and then they are useless for securing the cannulas. If the surgeons got in there and discovered this to be the issue, he would have come back with a chest cannulation. That means open his chest and insert directly to his heart. This also would have meant chest tubes which equal blood loss and in turn transfusions. Terrifying. Luckily, those fears were not realized and last night my son was safely moved back to his ICU room with his site the same. Lawerence, the surgical Fellow decided to take a new approach in securement that will hopefully help.

Our Mayo team of doctors and nurses are amazing. I'm not talking about their medical knowledge or ability to help my son. I am talking about the thoughtful, inspiring, we're all one team kind of amazing. Recently a heart mom close to me has run into some particularly difficult times. It hit me hard. I could feel what she felt, I could put myself in her shoes the way no other person could. It affected me and our team knew it. They rallied around me. All of them, the doctors, ECMO specialists, cardiologists, PAs and fellows entered my room with tears in their eyes. They spoke to me with their souls. There was an understanding, a grieving that they related to in their own way. Seeing their emotion and love was so touching. Lawerence told me that I inspire him with my strength and grace throughout this horrible journey. I was wrapped in hugs and love so deep from this group of virtual strangers who are required to remain calm and straight faced through all this turmoil. We are connected. They are part of our story.

This morning at rounds Dr. Dearani said "Let's do a transplant" and I about lost it. He wasn't saying he had a donor, just that he wanted to make it happen. He wants to save our baby. He hugged me tightly and said it will happen. We all smiled at the thought of it. Then we talked ECMO, does Finn really need it? A whole new wave of anxiety crept in as they contemplated the idea of a turn down. Don't get comfortable because the next up or down on this ride is right around the corner.

June 17th, 2017


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