Today has been an exhausting day for everyone. My last update talked about Olivia being on the conventional ventilator. Well, today was the day they decided to extubate her. After what happened last time when they removed her tube, we wanted to be there. To add to my stress, I found out we did not have one of our primary nurses today. It made me so worried to not have someone that knew her well on such an important day.

I got to the hospital just in time to be there for the extubation and Jeremy arrived shortly thereafter. It was a little chaotic, but Olivia fought to be stable. She is still on the bubble machine as I am typing this at her bedside. She has had more “events” while on the bubbles, where her heart rate drops. She did not have as many when she was on the ventilator. She does come back up on her own fairly quickly most of the time, just like she does when her oxygen drops because of her PDA.

The nurse she had today turned out to be great of course. We haven’t had a bad one. And the respiratory therapist was one that we knew well, so that made us feel better also. To add to the crazy day, they decided to move her to a different pod. We knew this would happen eventually, but we were not expecting it to be on a day where so much was going on already. We will miss our old spot because that’s where we have been and lots of firsts and memories happened there, but our new spot is pretty nice. It is a lot roomier and has a much better view.

As I type this, exhaustion is hitting and thinking of leaving her is hard. Not sure how I am going to handle that tonight honestly.

If you are a praying person, the main prayer is for her to get better at breathing on her own on the bubble machine and not have has an many episodes. Her stamina is not high, so she could be intubated again. She is also still on the steroid, so I am fearful that, if she is able to stay on the bubbles, as they wean her off of the steroid and it stops working, that she will not be able to sustain being on the bubble machine and will have to be intubated again that way.

There are so many variables and unfortunately there is no magic wand to make it all better. Patience is what we have to learn with our Little Olivia. It is all on her time.

Until next time…