So, Monday night/Tuesday morning was a rough time for all of us. Wyatt was running a fever again and his vent kept going off. Mama got about 2 hours total sleep all night. Now, mind you, one of our doctors had told us Monday night that they weren't sure if the plication surgery would work for us, giving us no alternative. I had a very, uber emotional night. So, when I asked why he wasn't receiving the hit therapy, as he had been receiving before, the nurse pulled his file, only to find that they had made that decision, and not notified either of us about the change, and I freaked. Also, only the day before our nurse had mentioned that his blood count was low and would probably need a transfusion, but no one told me about this. The nurse said that they found out about it a few days earlier. During the night, they attempted to do a CPAP trial and my poor little man vomited all over the place. He felt like crap, and all I could do was cry.
Surgery came in for rounds. It was the fellow (who, might I add is super good looking), Dr. Martin. He said that surgery was on for Thursday. Wait a minute! I had been told the night before that we weren't going to have surgery because they weren't sure if it would help, but now I am being told that we were indeed having surgery? So, Mama Bear showed herself!
I vented to our super sweet, super helpful nurse. Kristin then proceeded to call the patient advocate. So, my sweet Jan came in, again. We talked about everything that was now going on. I told her that I recognized that I need a goal, a game plan if you will, to set my sights on, or else I go crazy. She was very understanding and helpful, promising to get to the bottom of it all. She left and not 10 minutes later, surgery came back in. He said that they were going to proceed with surgery to tact his diaphragm down. They did feel like they needed to give this surgery a try and that halting it previously was in hopes that the nerve would regerate movement. As he was leaving, the general PICU team was rounding, so they were able to get together and have their talk. The PICU attending, Dr. Cutrer (who we love) apologized because he recognized that there had been a breakdown in communication along the way. Thank goodness someone was recognizing it.
So, Tuesday ended up, all in all, being a good day. Wyatt felt better after some Tylenol and he went to sleep without meds. I was able to get an entire 5 hours of undisrupted sleep. The nurse even giggled and said that she heard me snoring! UGH!
So, the plan at this point is to have surgery Thursday on the diaphragm. My poor baby is so cut up. I hate it for him. But, in the grand scheme of things, if these surgeries all help him, it's not a big deal. Besides, chicks dig scars!
Things I am thankful for today.
The ability to vent, cry and pray. But even more, the incredible and understanding people at Vanderbilt who want to fix it.
Cadbury Mini Eggs
Ben & Jerry's Chocolate Peanut Butter Swirl and the fact that the hospital has a Ben & Jerry's on the second floor to feed this addiction!