UPDATE (5/29/13)
Beckett has had such a fabulous day. When I called this morning as I drove to work they said he had had a great night. Each time I spoke with someone throughout the day they continued to say how wonderful he was doing. I could not have been more excited. I did have a small scare when a nurse practitioner left me a voicemail to give me a update. When I called back she said she just wanted to let me know he was doing well and they had turned his VapoTherm down today. Cardiology was also pleased with how he was doing. That was such encouraging news and helps make being away at work a little easier.
So after work I got back down to Indy as quickly as I could. My mom had stayed with Beckett for most of the afternoon since neither Jonny or I could be there. When I arrived the scene was not nearly as quiet as I would have hoped. They were actually getting an EKG and I could see on the monitor he was again having an arrhythmia. My mom just gave me a look and said he had been doing it for about an hour but they didn’t seem overly concerned. He looked the same as always and was happy and smiling when I walked in and talked to him. The cardiology fellow came up to assess him and said he was alright but they would continue to watch him. She had called the attending and he too said they would just let him be for now since he was acting normally. So, while it is not ideal, he is ok. We are hoping it resolves on its own and I would prefer sooner rather than later. 🙂
He got his nightly bath after I arrived and we tucked him in and he was sleeping before we left. So while he seems to be having a small hiccup this evening, he truly has had a great day. As always we just wait. Beckett is on his own schedule and he likes to keep us all on our toes. At least he keeps life from being boring. As long as he stays within reason. My mom kept telling him his mommy wasn’t going to like it but he did it anyway. That can’t say anything good about the future. I think we are going to have a stubborn one on our hands. Maybe we will just call him strong willed. Anyway, Beckett is doing fine, and we need to hold tight to that. One day at a time.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
Heart of Beckett 
Hmmm…strong-willed. Sometimes that can be a good thing – seems to me that has probably helped him work through and go over the hurdles he faces. 🙂 Continually, earnestly praying for your sweet Beckett…Keep hanging in there and we’ll keep praying!