Whoosh

12 February 2015 - PM Update

Well, Finn has had a red letter day. He's been breathing room air most of the all. Not consistently the entire day, but most of the day. He and I had a feeding session that the speech therapist described as "fantastic." And, he's two days away from a complete and healthy wean off of the sedation medications.

Yesterday, a friend posted this on her Facebook page.


As I scrolled through my newsfeed letting my mind wander away from the Children's Hospital this caught my eye. I took a moment to pause and think about those words. Pain and Joy. Happiness and Unhappiness. Fear and Love. I "liked" the picture and went on with my night. I'll be honest, I felt some pain yesterday. The early morning hours marked three full weeks on this journey. Today, Finn and I started our fourth week in the hospital. Today, Kyle remarked that Finn has spent one quarter of his life in this hospital. So, yeah. I felt some pain last night.

But, today, Finn put himself on "room air." During his morning care session Nurse Becky was taking time to clean his face and re tape the cannula. As she did that care she removed the oxygen from his nose and started working. And Finn was not phased by the removal of oxygen. He was hanging out. He was happy. His "sats" looked great. About 20 minutes in to this informal "room air trial" Becky informed me of what she'd done. She told me he looked great and that she leaving him on room air. A few minutes after that the docs and students came by for rounds. Finn still looked good. No need for oxygen yet. With approval from the doc Becky decided to remove his "leads" (the sensors that monitor heart rate and respiratory rate) and then she removed his pulse ox sensor. Next, she coiled up his feeding tube, tucked it in his shirt, and said "Mom, take him over to the couch to look out the window. Play with him. He looks great and doesn't need to be tethered to these machines right now."

Yes, ma'am. Gladly. And then, in that moment I started to feel so much joy. And the high of that joy overpowered any of the pain I was feeling last night.

So, I pulled out Finn's lucky blanket (it's dark green with shamrocks all over it) and set up camp on the couch. We looked out the window and I talked about the row houses across the street. We looked at the Basilica, and saw a flock of birds fly by. I turned on Mary Lee's 1-2-3 Sing with Me album and I sang to my boy. He was alert, and active, and happy. And he was breathing room air, in my arms.

The joy definitely outweighed the pain. A lot of you have written me and shared your own NICU/PICU stories. Sharing that honesty, that vulnerability, means so much to us. I've leaned on your words so many times. People say, "you won't remember the lows, you won't remember the set backs, but you will remember the milestones." Wow. That joy.

But, as we all know at this point in the journey, Finn likes to keep us on our toes. So, after about 90 minutes of alert play time Finn was ready to sleep. Oxygen saturation naturally declines during sleep, especially during deep sleep. So, we put him back in bed and back on the monitors. He hovered in the low 90s/high 80s for awhile. Eventually, the attending doctor made the call that he should be on 1/8th of a liter of oxygen. Seriously, kid?!?!

So, Finn spent the vast majority of the day breathing room air. But, during sleep, at times he needed a little wisp of o2.

Now, as the day draws to a close, Finn is resting comfortably in a very deep sleep. He's breathing room air. He hasn't technically "desatted" during this entire sleep. But, boy, am I watching the monitor.

I suppose this story is to be continued. But, I can say with so much certainty that today was better than yesterday. I can say with so much certainty that day by day, in every way, we are better and better.