If Don and I hit a wall about two weeks ago, it would seem that Nyana has hit the wall now herself. After successfully weaning her ventilator settings for the past week, we’ve taken it as far as we can before she’s finally caught on. The big strides we’ve been making on the oxygen requirements, the respiratory rate, and the ventilator pressure have all been stopped abruptly in their tracks as she’s decided that enough is enough, and if we lower any setting any further, she’s going to desat and beep until we turn them back up for her.
Fair enough. We’ve come from 85% oxygen to about 55. The respiratory rate on the ventilator—the number of breaths the machine gives her in a minute—has been slashed from 50 to 39. We’ve cut the morphine back to nearly nothing as well, and the vent pressure has also been reduced greatly. It’s a lot to expect a tiny body to cope with all at once. I can’t complain too much if she needs to stop for a breather (pardon the pun) before we continue.
But those of you who know me well know that patience is a virtue I am lacking. As fantastically unrealistic as it may be, I secretly hope every morning that when I come in I’ll find that she’s had a miraculous turn for the better overnight and they’re planning to extubate her. Of course that’ll never happen, but it sure is nice to dream about.
As much as I remind myself that we’re on her time now, and she’ll decide when she’s ready for the next step, I’m frustrated by her recent plateau. I’m frustrated to see her struggling for her next breath. Frustrated that I can’t just pick her up and hold her. Frustrated that Christmas is going to be here before we know it and she’s in no rush to start this whole breathing thing. I have days where the constant beep-beep-beeping of her machines is enough to drive me batty, and I’m agitated to the point of tears when I leave her bedside. Knowing that her ability to breathe is completely out of my control is leaving me feeling completely out of control myself. And there’s nothing I can do but wait for her to catch her breath and continue moving forward.