Yesterday was moving day. I barely slept the night before. My body was, and still is, full of anxiety, fear and excitement.
I brought Asher to school knowing that I wouldn’t see him until the weekend. My anxiety level was high with leaving Finn so close to his transport but I needed to see Asher. His energy and light give me so much hope. My idea was to go get donuts, a rare treat, however he was adamant that he wanted a muffin. We sat and ate our muffins and talked about the week. How Papa and Grandma were going to stay with him for a few days and then when the weekend came he gets to join us in Rochester. He was ecstatic that we will have NEW playgrounds to check out.
Back at Children’s they had done everything to prep Finnegan for his road trip to Rochester. It was so calm when I got back. Lots of hugs and tears. They have become our family. The team, beyond even the doctors and nurses, have seen us through the darkest days of our lives. I’ve squeezed their hands and cried on their scrubs. It was hard to say goodbye.
When the transport team showed up it got real. I broke down sobbing. I’m not entirely sure if it was fear or happiness, maybe both. I was scared because I knew what they were going to do in order to get them on the Mayo’s ECMO but I was happy because I knew that this was the next step in our adventure. Rochester, heart, heal. Things happened quickly. I was so happy to see Dr. Rood. She wasn’t supposed to be on but she came by to say goodbye. She stood next to me when they took him off ECMO and held her breath with me during the minute long transfer. Once they had him up and running on their machine it was a matter of untangling lines, switching him to the stretcher and before you knew it they were on their way via ambulance. Jeff and I not far behind. Driving the longest road of our lives.
I’ve never been one to worry about the weather, but with the precious cargo that ambulance had on board I was terrified. It was gray, misty and foggy a metaphor of what I was feeling internally. “Please don’t rain or snow” I kept saying to myself on the way down. We drove separately and actually beat the ambulance. Jeff and I waited impatiently until greeted by our transplant NP and coordinator. A whole new family to get to know. Nurses, doctors, coordinators, everyone. The team is much larger here because it’s a teaching hospital so there are added bodies and names to remember. It was a relief when we saw Dr. Johnson, our first familiar face.
The transport team found me as soon as they could to tell me that he had a successful trip. A little bit of balancing with the heart rate and blood pressure, but nothing to worry about. They settled Finn in and did a lot of baseline work. Echo, x-ray, ultrasounds and lots of labs. The team here at Mayo is so complimentary of our friends up at Children’s. They keep reiterating what we already know, that they took tremendous care of Finnegan. He was so stable by the time they had to transfer him that it made Mayo’s job easy. Another reason to love our Children’s friends.
This morning it was wonderful to see Finn’s face. He looked as content as one can in this situation. The atmosphere in his room was calm. During rounds there was a lot of information to discuss but ultimately not a lot of changes to his care. He is listed, he needs a heart. We have to keep his other organs intact and ideally get him of ECMO. We know the longer he is on it, the higher the risks are. As of today the rest of his body is holding up. As of today he needs ECMO. If he starts to tell us he doesn’t we can wean support but today he needs it.
We will figure out our new normal. Hopefully just in time for it to change again and that change will mean he gets his gift. Until then we follow Finn’s lead, support and love him. I am so impressed with the Mayo team already, even though I woke up today missing my Children’s family.
For now my son is stable and on the list. He has a whole new group of people helping and rooting for him and that isn’t a bad thing. I love that little meatball so much. He has been opening his eyes and squeezing my finger. It’s obvious he knows that his daddy and I are there. His heart rate and blood pressures have been stellar and we hope to maintain that. Our intensivist, Dr. Van Doran is just amazing. She is already talking about starting nutrition! The idea that he will be getting breast milk, albeit extremely small amounts, is exciting. That is my job as the mommy, feed the baby. Our nurse Mandy already has seen that I want to be active in his care and is encouraging me when possible. Everyone has been so kind and generously put up with my question asking. Jeff is even asking them now, there is so much more to learn.
Children’s was our training. Transport and listing was the starting line. Now we begin the race. The problem is, we don’t know how long the race is. 5k, 10k, half marathon, marathon, Iron Man? We don’t know so we have to pace ourselves and our expectations. I’ve been told this is the hardest part, the waiting. The staying “healthy” so-to-speak.
Along the road we are going to need encouragement, water, nourishment, support and occasionally to be carried toward that finish line. We know that we have the right family, friends, work and medical to help and support us and for that I am grateful.
You are one loved kiddo, Finn! On your mark, get set, GO…