Yes, we're into the twenties now.
I am feeling really weary. This is taking too long, I am just tired of everything. I'm tired of being here, I just want my normal life back. I want to sleep in my bed, with my whole family at home. I want to feel like I am in control of something.
Drew is in the playroom right now and one of the child life people is playing with him so I can have a break. Dan is having lunch with a friend so he can have a break. The only one who doesn't get a break is Drew.
They said they want to do 14 days of IV antibiotics, and we are on day 11. That would make day 14 Father's Day. This will be Dan's second Father's Day in the hospital. He also spent his first Father's Day with Drew recovering from his Glenn at UCSF.
Today they tried lortab with ativan for the dressing change. It makes him crazy. At least he is happy, but he is so hyper. He's throwing things, trying to climb out of bed (while he's connected to his IV and his oxygen), running when he's supposed to be walking slowly so we can keep up with him and all his lines, and generally acting like a crazy boy.
I tried to the dressing change last night and I don't think I'll do it the same way again. I had to be the "sterile person" which meant I could touch nothing and basically do nothing to comfort Drew. Since he was still agitated it required three nurses to come in and help hold him down while I did the sterile dressing change. I think this time I will be the "dirty hands" so that I can help with the dressing change but still be able to calm Drew.
What else is going on? Drew seems to have somewhat of a cough, but no one seems concerned about it. Except me. I am telling you, it's my mother's instinct, I know this child has some sort of respiratory thing going on and that is why his O2 sats are low, and why he had a fever and why he is now coughing and why he is still on oxygen. I guess it doesn't matter if I'm right, it would just make me feel better to know what is going on.
I haven't talked with Dan yet, but I'm feeling like I might want to transfer back to UCD if that's an option. At least we can be followed by our own team of cardiologists and we have nurses who know and love Drew and will take good care of him. We can be in our own home and Ava could have more of a normal routine.
OK, that's the end of my pity party for today. Maybe I will have a happy post tomorrow...