I felt so defeated this afternoon. I felt overwhelmed by work, and trying to get out at 1 pm was nearly impossible. I made it out at 1:15 and left feeling like I couldn't imagine being able to balance this all and do any of it well. Laura had been at the hospital all night and I figured really needed a break and my summer interns were having their last day with us and we were doing a little celebration. I had a great cry in the car once I got into the garage. That alone time in the car driving from work to the hospital is good cry time. Then I'm done and can be here. I'm definitely an alone crier and the confined space of the car is good. I've even got my cry stoplight and cry song set. It's almost funny :-)
They've almost 100% ruled out metabolic stuff (had a few questions in the last couple of days, but they've mostly decided no). They may have to re-do his PICC line in the next day or so which sucks, but I knew they'd have to at some point. They've taken him down one more step on the Milrinone and are starting to wean him down from Heparin. So far so good.
One of our friends, Justyn, told us the sweetest story about her daughter Amira who is a little over a year. Amira loves to come over to our house and play with Roxie and likes to look at Simon. The last 2 weeks, evidently, she's been "talking" about us, even when they're not near our house, which she doesn't usually do. Mostly this involves saying "Woof woof" "ball" "wah" which means she wants to come to our house to play ball with Roxie and see Simon. Her parents haven't told her anything about what's going on with Simon...she's just been vibing him. It's pretty sweet and a little magic.
Simon is doing a little better each day, I think. He's certainly no worse which is really good. Less sweaty today, slept more, nurses are more hands off which feels better all around. Getting geared up for social time this weekend and some good break time with Laura, which we really need...