Day 7 - Wednesday

I had originally been hoping that I wouldn't be posting a Day 7 and that we'd be home, but things have a tendency to turn out without regard to how we want them to go sometimes (especially in the CHD world). Nevertheless, Sofia had some progress today - they removed her chest tubes! It was done under sedation (versed), so she was pretty calm. I was there with her the whole time and the surgical nurse cut out the stitches and pulled out the tubes- those things were long! at least 4 inches. I can see why she's feeling better now that they're gone. It was decided during rounds this morning that they could come out today. Also discussed in rounds was the goal to wean her oxygen and also get an echo since she hasn't had one post surgery yet. She had an echo around 2, but I left for home around 3 today, so we didn't have the results. When I talked to Oliver this evening, he said no one ever gave him the results, but he asked her nurse and to her it looked like the report said everything was fine. He'll make sure he asks at rounds tomorrow morning. I would think that we would have been told if something wasn't right, but I don't think that they realize sometimes that the parents sit there and hang on waiting for the results of every test done on your baby. The attempts at weaning the oxygen were a no-go. To be honest, I'm not sure if there was that big of an attempt. The surgical nurse experimented from taking her from 2 liters down to 1.5, but the nurse was in the room the whole time. Well, I know that Sofia gets agitated when there are people in the room, so if someone is hovering then I'm not surprised that she would de-sat. I don't want to oversimplify it because her lungs haven't looked perfect in her x-rays so I'm sure something else is going on, but maybe the next time they try to test out reducing the oxygen they do it when she's super calm and with just us in the room. The resident said this morning that there was some improvement on her chest x-ray from yesterday, but it almost looks like a slight collapse of the right lung and not fluid as they originally thought. I guess time will tell, and we'll see how it looks tomorrow morning. Respiratory therapy is coming several times a day to percuss, and she is encouraged to blow bubbles and walk, which are good things for the lungs. I'm pretty sure if she can get her sats up without oxygen we won't have much longer here.

We waited this morning for the therapy dog that was supposed to come in, but we got visited by 2 Cleveland Browns players instead. Sofia didn't want to have anything to do with them, but I got a good picture and a signed Browns pennant and coloring book. There is no mistaking that I know who the real heroes are here - definitely the ones who repair children's hearts and not throw around a ball, but I thought it was a nice gesture anyway.

I realized that only in the pediatric floor of a hospital, sitting there with your child, can you feel so grateful and ungrateful at the same time. There are many times when I've caught myself thinking that we've seen so much bad stuff this week and I'm so glad Sofia has been in such good health, but then I've also thought how unfair it is to have a chronic condition. In the world outside of the hospital setting, I think these thoughts are pushed to the back a little better because we are just living our lives, but on M40 it's hard to ignore.

Say a special prayer for Sofia tonight that her lungs improve and we can bust out of here soon. I'm not sure how much more I can take of the snoring baby, the crying baby, the blaring t.v. and the beeping machines. :)

These guys were very nice - and big. Evan Moore is tall.