Last night I was already in my PJ's (Logan's lasix diaper had leaked all over my lap so I had changed into jammies) I figured I might as well try to get some sleep before Brad went back to the RMH (Ronald McDonald House) so that when he left I could manage being up with Logan during the night. Logan usually loves Brad, but he would have nothing to do with him. When Brad tried to hold him he freaked out, and when I am in the room he cries until I hold him. The nurses finally took me aside and told me I needed to go back with Brad and sleep (I must have looked like a train wreck). I cried and told them I couldn't leave and they promised me they would take such good care of Logan. His nurse Rachel was the cutest nurse ever and so compassionate, and then Julie was Logan's very first nurse here from his first surgery- she comes and checks on him daily. Julie said she didn't have a patient to take care of during the night so she could hold Logan all night if he needed it. So I went to the house and slept like a rock.
Today we are smiling a little. Logan had a little bath and we put his Superman shirt on him. He is looking less like a patient and more like a baby. The shirt makes a big difference because it hides some of the wires and tubes. I let the kids (Ashlyn and Tanner) see him on the computer this morning when we talked- up until now (post 2nd surgery) I have always made excuses of why they can't see Logan, (he is sleeping or a doctor is helping him) because he looked so miserable I didn't want it to worry the kids. Today when Ashlyn saw him she said, "Logan why is your head so big." Brad and I thought he was starting to look "normal" again- good thing she didn't see him a few days ago!
Thank you to this wonderful heart community for reaching out. I know we have never met, and most likely we never will. But it helps to know it gets better. These are experiences I would never wish upon anyone- and I wish you hadn't had to go through this, but it helps to know someone understands what we are feeling and going through. Most of all it helps to know that our Logan will be back!
Yesterday I was really questioning our decision to come out here, maybe not questioning it, but wishing we were home. We have ended up with the surgery the doctors in Utah were going to do in the first place. But then, I still know we were meant to come here. The sweet nurse Julie that held Logan through the night pulled me aside yesterday and said, "I just wanted to let you know I think you are two of the best parents I have ever met. I think it is incredible that you were willing to come all this way to try. To give Logan hope." She said Logan is so lucky to have us, and that she hopes we don't regret our decision because we gave it every fighting chance. I needed to hear that yesterday. Maybe our coming out here will bring Logan comfort when he is a teenager dealing with his heart and he can know that we did everything we could in our power to help him. And we will never have to wonder, what if.
They are taking Logan off the sedation completely today. We are hoping he does okay with that. He ate 2 oz. yesterday, but that was it. They are going to give us today to try to get him eating again, and if he still won't eat they will have to put in the NG tube (feeding tube). Our nurse today is really on top of managing his pain, but not going overboard- that is good. (He is actually sleeping in his bed right now). So here is to a new day!