Big Changes

Abbie and I both went to the Ronald McDonald House for a bit today to shower and rest. This worked well as Max was pretty settled for his Papa (Bob) and Tata (Debbie) while we were gone. Upon our return, they were getting Max ready to be transferred from the PICU to an ICE (Intermediate Care Environment) room on the cardiac unit where he will no longer have the one-to-one nursing care. In the ICE room it is two-to-one care.

Max was super calm and awake while packing up in the PICU. He was relaxed during the ride from PICU to the cardiac unit. We are not sure what happened once we arrived on the unit but within minutes of getting here, something drastic changed. Max began thrashing uncontrollably. He was screaming "Mama" but despite Abbie holding him and being by his side, she could not console him. This was a very big change as she has been able to calm him down very easily up to this point. His chest tube location started bleeding, he was getting very hot and sweaty and there was NOTHING we could do. He seemed to be in a lot of pain and discomfort. Abbie and I were left alone in the room with him while the nurses were at the nursing station (presumably discussing what options they had) but we felt very scared and alone nonetheless.

Someone finally came and asked if I wanted to activate the PICU Rapid Response Team (RRT) and I said yes. Several staff from the PICU (people we were still familiar with AND people who were also still familiar with Max) were rushed to Max's bedside. Doctors, nurses and other staff came to his aid however by this time, he had settled on his own very suddenly. He became very calm and sleepy all of a sudden and this almost scared us even more.

He had blood work taken, an emergency echocardiogram of his heart, and a few other tests done to ensure that nothing drastic had changed (internal bleeding, etc). Nothing was found and they told us that it could have been pain from being transferred to the new bed or just the adjustment to the new and unfamiliar environment. We are in a room with 3 other patient's and one of them was really worked up when we first arrived. We think that maybe Max fed off of this patient's anxiety a little bit and got into a bit of a panicked state. Whatever it was, it was terrible and very scary.

He has since stayed calm and Abbie is able to be back in bed with her beloved boy. He is actually starting to watch some TV now too. We really can't wait for the rest of these lines, tubes to come out and have him able to eat real food and move around more. I think that this will drastically improve things.

Cam