Rough One - Day 5

Overnight & Today was a rough. Elias was in quite a bit of discomfort and very agitated. As is typical in the hospital when there are multiple services trying to coordinate care communication breakdown is almost certain. Today is Urology wanted to continue the sedation of Elias where the ICU team was trying to eliminate the pain medication and transfer him to another floor. Despite our efforts to try and get everyone to talk in the same room the ICU team moved forward trying to create their own plan. It was a frustrating day for us as parents and advocates. It did not help that Elias was having so much difficulty today which the pain team suggested is fairly common for the second day after surgery. we finally have a conducive plan in place that will hopefully allow Elias to rest tonight. And we will hopefully get everyone on the same page tomorrow to create a more feasible plan. Thank you all for your continued prayers thoughts and support through this very difficult time.