Long week, a lot going on...and I'm just feeling detached and numb from it all. We tried to take a step closer to getting Cecilia to be ready for home and it ended up making her have a scary step back. I'm getting so tired of that dance! I wish she would be past stage 2 already.
Monday was Gina's first day back at school. Today was Julia's first day. The house was a lot more quieter with them gone ;)
Her first day went great. The girls in school told Julia at recess that she cant be friends with boys. I told Julia don't let any kids tell her what to do, if she wants to be friends with a boy, then she can!
Cecilia was scheduled for a g-tube today, but they bumped her up to yesterday. She was really being a good girl despite being starved. She even smiled at me. She was only really fussy when she needed a diaper change, but that always happens.
And one of her regular nurses, stopped in to tell me that the new outfit hanging in her room on a hanger was from her! That was so nice of her! ♥ It is very cute, I will have to take a picture of it later.
She was rolled away for her surgery, and I left there crying. I knew this surgery is not a big deal compared to everything else, but I was still going to worry about it. And sure enough, as nobody would be able to predict, Cecilia has had struggle recovering. They were able to stabilize her super quickly. Everything happened so fast. They are worried they were missing something from an echo. This morning she went down for a CT on her heart, and it showed a little bit of narrowing on her shunt. Right now I dont think it is a big deal because there is still good flow through her shunt. I think they are going to just keep a close eye on it, and do something in a cath lab if it gives her anymore problems. She has an infection in her blood stream now. I 'm going to try to figure out whats the plan when I visit her...Karl should be getting home any minute. I know she is still on the vent, but Im hoping it will only be temporary. I think it is safe for me to calm down now but I just cant stop worrying about her....it was very traumatic for me.