Finn is visibly feeling better now. He is more awake and alert. He was offering up smiles and coos while we read books and sang songs last night. This morning he woke up and cried for his mama. It’s obvious that he is a different child than he was the past few days much more relaxed and not working hard to breathe anymore.
Our night nurse turned down Finn’s oxygen levels so he is now on room air with a high flow. Just moments ago the respiratory nurse came in and decreased his flow by two more points. We are weaning his support which means that he is clinically doing better. I learned from our time in the hospital that we add things quickly and remove them slowly. How I personally gauge our progress is whether we are adding or subtracting care. Today we are monitoring him to see how he does as we slowly wean support, other than that we likely won’t have a lot to report on.
We can’t start talking about oral feeds or working on the problem we came here to solve until he shows that he doesn’t need the respiratory support. I am told that won’t happen until next week, at the earliest. So, over the weekend we will continue to pull back until we don’t have any breathing support. He appears to be doing really well with the changes we have made so far. I feel like my happy baby is back. He is going to sleep rather than passing out from exhaustion.
Jennifer, our nurse last night, also shared with me a profound essay that really touched me. It’s not about changing our situation. It’s about changing the way we look at it.
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
We are going to proactively meet with a transplant team next week. Just to talk. It will help me process our potential outcomes and be able to do what I do, ask questions. It doesn’t mean we are getting on a list, it doesn’t mean Finn needs a transplant, it just means we are going to meet the transplant team. Education. I asked two questions today to our cardiac physician. One I knew the answer to but had to ask it because it makes me sad to think about. My first question was “does another baby have to die for my Finners to get a heart?” Of course I knew that this is the case. I had biology and anatomy classes. But when you think about something like this you can’t help but think that for my child to live someone else has to lose theirs. We talked about it, the positives and negatives. My second was life expectancy and quality of life. That is a question I have to save for the transplant team. I was encouraged not to Google it because the information is not accurate to HIS types of needs. That no one talks about or blogs about their happy child who lived for 50 years with a transplant but those who lose loved ones or have complications do. That sometimes, often times, one transplant isn’t enough. I was informed that a lot depends on the person and whether they take their meds and go to their appointments. So, I won’t Google it.
I am still holding on to bucket A. Dr. Gremmels, the cardiologist, said that is a perfectly healthy and okay place to stay for now. They also call him “Dr. Sunshine” here, but I like it. He said he has plenty of kids with HCM that he sees that have not received a transplant and are doing well. So, column A it is. Today at least.