So the other night Charlie wasn't eating well. He was vomitting and was very cranky. I decided I would call the pediatrician the next morning, but at 12:45AM, he woke up SCREAMING so I made a bottle for him. (This has been the new norm for him. He doesn't want to wait for a bottle, not even one minute! Not fun at 4AM to wake up to a screaming, inconsolable baby who only wants a bottle in his mouth the second he opens his eyes.) Well, Charlie would not eat at all. He just kept screaming. He was trying to suck on the bottle, but he just kept yelling. I started getting nervous. This is exactly how he was when he was first diagnosed. These are signs of heart failure. I didn't want to wait until the morning now. I called Tim's mom's girlfriend to see if she was home from work. (It was 1AM.) She wasn't, but she told me that her sister was awake, and she was more than certain she would bring me to St. Luke's to get him checked out. I called her sister, and of course, she said she would. (She, like Trace, has been very proactive in Charlie's journey.) I showed the front desk Charles's discharge summary from Children's Hospital with all his information on it, and they sent us into a room immediately. We met with the nurse and were registered within twenty minutes which is highly unusual for St. Luke's. After meeting with three of the doctors there, they decided they would send us to Children's. They performed an EKG and did a chest x-ray, and by 5AM, we were on our way to CHB by ambulance. I absolutely hate being in an ambulance. They drive so friggin' fast, I almost pissed myself a few times. The needle on the spedometer was completely facing right. We sat at Children's ER/ He was sent for an x-ray of his belly, and they tested a stool sample. Finally, they decided that it wasn't his heart. It was just a normal stomach bug. They did give us good news. (We ended up meeting with cardiologist whose name is Wes. He actually performed the echo that diagnosed Charlie's ALCAPA. He recognized Charlie too. We met with Dr. Rhodes too.) They said his heart looks smaller than it did a month ago which means it is healing! That is fantastic.
We went home. I spent today recovering from lack of sleep. (I had only got two hours of sleep the night he went to the hospital.) I have been slacking a bit. I was supposed to call to check on the status of Charlie's medical records, make an appointment with Dr. Rhodes for nest month and with Erin, the nurse from Schwartz. I have been so busy cleaning and cooking and doing everything else that I have really been exhausting myself out and trying to catch some extra sleep in the morning.
Tomorrow, Jess, Charlie's visiting nurse, comes to see him at 8:45 so no extra sleep. I am going to make the calls I have been slacking on tomorrow.
I have been so emotionally and physically drained lately. I wish I could take a vacation. Well, I must shower and try feeding Charlie again. (He has been doing fantastic with eating though, waking up every three hours to eat.) Bedtime soon hopefully. I have been trying to update at least twice a week, but it gets very hard. I am sorry to all that have been looking for updates!