Ok - Tuesday is the day we are planning to extubate!
Rowan is having some tests done today as well as some exams to make sure that he is ready. They will see how well he can pull air in on his own, make sure there are no leaks around the tube they need to know about, and check his blood to make sure his blood contains appropriate amounts of Oxygen and Carbon Dioxide.
They will start him on steroids to help his lungs and consider an afterload reducer (basically a blood pressure med) to help him when he breathes on his own as well.
Last week we went through a Neurology consultation and tests, a Nephrology consultation and blood tests, a blood stream infection, and weight loss problems with Rowan. Neurology came back saying that Rowan looks normal for a kid who has been in the ICU their whole life. Nephrology came back saying that his irregular blood levels are explainable and they aren't concerned. The blood stream infection was likely a contaminant and Rowan has had no problems to show that the infection is something for us to worry about and his weight is back up now that they've added more calories to his nutrition.
Moral of the story - don't worry until someone tells you to. If I freaked out about everything I'd be in the psych ward by now. If you have a sick kid, you have to take each day at a time and remember that worrying doesn't help anyone.
I could choose to freak out and worry about each thing. I could choose to sit and cry and feel sad - but sadness doesn't fix Rowan and doesn't help our daughter and certainly doesn't help my husband. Instead, we choose to stay positive, to make jokes and laugh off Rowan's back steps, to keep his room full of words of joy and love, and to make each day the best we can.
So I'm optimistic about Tuesday. I'm looking forward to hearing my son's voice. It's been so long I've forgotten what he sounds like. I'm looking forward to holding him when he doesn't have a tube in his mouth. I know there is a chance he will need to go back on the vent, but I'll worry about that when they tell me to.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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