So, after things didn't work out with the home vent last week, the docs wanted to try Clay on a round of steroids (to boost lung function), then get aggressive & try to wean him off the vent altogether. Welllll, t'was a good thought. We could see an improvement with the steroids; he was down to 21% oxygen after the first dose. But once the ventilator settings started to get messed with, Clay wasn't happy.
Monday, vent settings were cut in half & he did okay with the changes. Then on Tuesday, Clay was put on CPAP. We could see that Clay was working harder at times--his respiratory rate was high, he was retracting & just not acting comfortable. But we hoped he would level out and get used to the different way of breathing. He was fussy, but I was blaming the steroids for his irritability--a little 'roid rage, ya know?! But then, Clay had a rough night. He even dropped his heart rate & oxygen levels so much at one point, he had to be ambu-ed (resuscitated). So, an x-ray was ordered & it showed his little left lung had collapsed again. Dang it.
We knew it was a long shot, but I was hoping so bad to get off the vent! I could just see us going home, dancing all around the house, no tubes attached (no ventilator, at least), feeling so free! And I've felt guilty all day for Clay's uncomfortable-ness. We knew he wasn't his normal self yesterday, but we hoped he would settle out...wanted so bad for him to pull through and fly. But he definitely let us know he wasn't ready. And we can at least say we gave it a valiant effort.
Clay got his vent settings back this morning & is rebounding well. Still on the mend, but he's getting back to his bright-eyed self. I'm so proud of my boy--he tried so hard, poor feller!
The plan now is to let him rest & recover the rest of the week and over the weekend. Then, we're going to try a different home vent on Monday. We're getting the same kind of vent that Clay's buddy, Mason, is on (and doing well on! yay!!!). Please pray he has great success. And that Mason will keep it up and finally get to go HOME! :)
Ya know, I feel like I've held it together real well the past couple months, but I felt pretty down this morning. It's just not fair! All my life, it seems that all I've wanted to be is a momma--and here I am, scared sometimes that my baby doesn't know me as his momma. It's not fair that we've had to spend the past 3+ months away from home. But as soon as I start to feel sorry for myself, I think, 'it could always be worse'--and it could be SO SO SO much worse.
Then I think about all our blessings. All the kind words & prayers & thoughts that have embraced our family. All of the donations & financial help that has helped relieve stress. The new friendships & relationships made with other families & nurses. Our awesome friends, Noah & Brittany, who have let us practically move in with them for the past few months. The thankfulness I have for Eric. I don't want to gush, but he is beyond incredible. I cannot imagine going through this with anyone else. The support from my amazing and wonderful family--I don't know what I would do without each & every one of them.
Another thing that cheered me up today: we moved to a window seat in the nursery today & I love it. And I got a comfy chair to sit in! Seriously, when I get rich one day, I am going to donate some comfy chairs for the NICU. They do have a few gliders for parents to sit in, but they're pretty awful on the tush & most of them don't even rock. So I'm stoked I snagged a comfy chair--I think I can probably sneek a nap with my lil guy tomorrow.
See, things aren't that bad ;)