Regressing

Micah is one of the most unpredictable people I know. We were discharged from Children's on Tuesday, March 15. I definitely thought we were leaving too early. Micah still had a cough and he could barely maintain a decent SAT. Dr. Jonas seemed confident Micah would heal better at home and after the weeks of hospital life, we agreed with him. That Friday we took him to his follow up appointment with his pediatrician. Like I mentioned in a Facebook post, she was not okay with how he was presenting (low sats, raspy breathing, grey hands and feet) so she sent him to the ER at Children's. When we got there his sats were 44! :( He was admitted and as soon as they put him on oxygen he perked right up and was his old self. We had such a good weekend and at rounds this morning we discussed possibly going home tomorrow with oxygen.

One hour after rounds, his nurse came in to give him his morning meds. Micah began to cry. It's typical for Micah to cry at the sight of hospital staff so we thought nothing of it. She stepped outside the door, just out of view, but Micah continued to cry and his SATs started to steadily decline. He started flailing his body around like a crazy person, I thought he was definitely going to hurt himself. It's like he was fighting just to take breaths. And even though he was being so wild, his heart rate was dipping into the 70s - his normal heart rate is 130s. The room filled with people and next thing I know we're headed back to the CICU. I can't remember all the details but during Micah's episode, his IV went bad so they had to try to replace it. It's so tough to get an IV on him and the doctors needed to administer meds right away so they decided to give him an intramuscular (IM) of ketamine and rocuronium. Then they gave him an intraosseous (IO) of a different drug- an IO is like an IV straight to his bone. Then they intubated him and put in two central lines - an arterial line and a PICC line.

He's totally sedated and paralyzed and I have no idea what's going on. How can we go from talking about discharge to being sent back to square one? My head hurts, my eyes sting and my heart is breaking. Just last night Micah and I were playing and laughing. And now he's medicated and unresponsive. Thinking about his laugh from yesterday just unravels me. What is happening?

I've heard a few theories since this morning - they think he might have the flu, but they also noticed his right ventricle wasn't squeezing as well so he could have a clot in his conduit to his left pulmonary artery. I just don't know... I pray that it's just a virus and not something seriously wrong with his heart or lungs.

This is a video from last night.