Day Five Post Op

So today makes a week we have been here. A week since he was diagnosed. A week since our lives were turned upside and taken on this crazy trip. As you all know, Charlie opened his eyes yesterday. :D :D :D I am still on cloud 9 about that. Today is going to be a pretty relaxed day of visitations. There is no big goal today. Since they are extubating him on Monday hopefully, they will start to wean him down on the morphine tomorrow, and since they aren't touching any of his meds today, they can't increase his feedings because he is at the maximum volume he can tolerate right now. They said last night that Charlie weighs about 10, almost 11 pounds which means he has lost two pounds. That is a lot for a baby to lose in a week. You don't think it is because an adult's weight fluxuates a pound a day anyway, but a baby? That is crazy! He will begin gaining weight when he can eat more. My poor thing. When he woke up, you could see his little tongue trying to suck on his breathing tube like he was going to get some food out of it. He is such an amazing child. He has been doing great, and Addison has been awesome too. Her life is a mess right now as well. She is so used to having me around 24/7, and now I am not home. She comes to visit me in a hospital for a few hours and goes home with Tim. It's tough for her. I can tell. I talk to her on the phone, and she asks when Charlie and I are coming home, and it hurts. I just start crying because there is nothing more that I would love than to be home with both of my children. (and sometimes Tim. lol)
There is just so much on my mind that I would like to share today since there won't be much progress with Charles today. Thinking about Charles's surgery, it's insane. Dr. Baird and the surgical team literally gave my son another chance at life. If it weren't for them, he would have become sicker and eventually passed away. (Remember, the mortality rate of ALCAPA without surgery is 93%.) They fixed his heart so he can go on to live a normal life eventually. I owe them so much. I am so grateful, and it blows my mind that there are people in the world that can do the things they do - they literally save lives several times a day!! Can YOU do that? lol I will probably be updating later on today. We are expecting quite a few visitors today. :)

Look at this little boy! <3
Doesn't he make your heart melt?

Charlie has a new blankey. One of the nurses gave it to him. :) They love him over here. lol

Well, I sat in on rounds, and they are going to get him off of the morphine today and increase his calories. The plan is to take his tube out Monday, but they are going to try to wean him off of the epinephrine after Monday but keep him on milrinone. It's so nice to see him heading in the right direction. <3