Day 761/133

We are settled into our new room on the fifth floor, the Pediatric Intensive Care Unit. It was scary to come here. But this is where we needed to be tonight, and after one of the longest days in recorded history, I feel like I can finally take a breath. Benjamin and I got very… Continue Reading Day 761/133

Day 752/124

and everything seems to have gone terribly wrong that can but one breath at a time is an acceptable plan she tells herself and the air is still thereĀ  ~ani difranco   It seems that as soon as we have a moment to exhale, it’s time to take another deep breath. This morning Benjamin felt… Continue Reading Day 752/124

Day 696/68

Benji slept a lot better last night. We both did. He woke up for the day and coughed for quite some time, but cleared his lungs and moved on. He asked for a hot bath to bring him comfort. The cough disappeared with the daylight hours. This morning’s numbers were sobering. The bright spot was… Continue Reading Day 696/68

Day 687/59

It was a very busy day up here on 7 South. I was pouring my first cup of coffee when the phone rang. It was the nurse navigator for the CAR-T trial at the Children’s Hospital of Philadelphia. Benjamin had just woken up, and nurse after nurse was coming in to say hello to him.… Continue Reading Day 687/59