I am encouraged that Finley is back to a good space – her blood gases have been good, and we are back down to about 40% oxygen and her CO2 is looking MUCH better. The less than optimal thing is we are kinda back to where we started- this in between space where she could be worse, but she could be better and since we haven’t been able to wean much from her settings, the doctors don’t like to see that. I think she just needs her time to recoup her energy and then we will start seeing her come down – it’s been a rough 12 days for my girl. They just did a new ECHO on her heart to check her PH to see if that has gotten worse.. if it does look worse, or she doesn’t improve much over the next few days – Dr P is talking about adding some more medicines in the mix to try to and be a little more aggressive with treating her PH (Sildenafil, Decadron) so that we can come down from our settings, hopefully get to the conventional vent and get off the NO and get to surgery.. that is the wish list.
Finley is getting a reputation for being a “drama queen” and is very sensitive (that’s her PH) but the last 2 days have been MUCH better. She is still reactive (meaning her numbers go up when they mess with her) and they have to sedate her before hands on care. Hands on care is at 8, 12, and 4 every shift and it is the time when I (as long as she is on a good space) or daddy gets to change diapers and check her temperature – last night I even got to massage her head for a while because she has some swelling from being on her head all the time. I live for those times when I get to have contact with her. We also read stories and sing to her.