I’m home for a bit to shower and pack some stuff to take back to the hospital. Today is terribly boring and hard. All we can do is sit and wait. They check Sky’s vitals every two hours, which just sucks b/c she hates it, and it’s almost always just after she’s fallen asleep again. Poor thing just wants rest and comfort. She looks absolutely pathetic right now. She has eeked out maybe 3 or 4 smiles in the past two days, and they are weak smiles but you can see her sweetness behind them trying to come out. Every now and then if she’s napped well, she’ll kick her legs and reach out her arms at us like she wants to play. Yesterday they brought in a few toys so she can play with stuff while she lays there. They also brought the same aquarium crib soother that she has at home, so that is nice. The music seems to calm her, and I gotta say, I enjoy the music as well. It’s a nice change from the normal beeps of the machines at the hospital, and the heartbreaking sound of other sick kids in the PICU. It is just a sad place to be overall, and I can’t wait till this is all over and Skyler is back home safe and sound.
Thanks again to everyone for your prayers. Keep praying, because she’s got to get healthy for surgery, and then make it through that and recovery. I’m so fascinated and frightened at the surgery they plan to do. I don’t know how it’s possible but they are the experts. I just hope it can happen soon! Every second I worry how much longer her heart wants to keep working so hard…