10/24/23

 Off to NYC we went. Ethan drove the first 2 1/2 hours while I worked. Our departure was uneventful. He did well until we were switching highways in Syracuse and we got a call. It was from NYC saying that we had to be to the hospital early because Ethan needed an iv and fluids prior to the procedure.

This is something we were never told. Anyone who knows Ethan, knows that he does NOT like surprises. He immediately went to anger. Ugh! Not a little anger, ALOT of anger.

He and I discussed his options. I know the right thing to do is to have him get fluids ahead of time, but it is also important that his voice is heard and respected regarding his body and treatment. We decided that we would ask his doctor to see if he could skip the iv catheter with fluids. 

His doctor wrote back and said that he could skip the iv and the fluids. He considered this a win and was happy that he was listened to.

This same doctor sent Ethan a questionnaire to see how he was feeling about switching over to an adult transplant team closer to home. They asked a series of questions in which he was very thoughtful about his answers. He even made a comment about keeping himself in check tomorrow because he typically is disgruntled and difficult by the time we meet with the cardiologists for the results of the heart catheter.

I told him that it would be nice to switch doctors so we can be closer to home, but I was hesitant because we trust these doctors. It would be hard for ME to trust a whole new team. New doctors won’t know him the way his current doctors know him. We will discuss it tomorrow and see what the plan is.

With the exception of the one freak out, today went extremely well. One of the best trips to NYC. Ethan is even excited about his go-cart and him switching out the engines.

We always have to get a room that overlooks the expressway. Ethan just LOVES watching the traffic. Just stands in the window and watches it all. Just like he did when he was 4.