1/4 8:05 am

Ethan has had quite an evening full of blood draws, echos, ultrasounds, so much for not agitating him. Balancing small adjustments on his pumps it’s the damn nutcracker ballet in here. A full on choreographed magnificent ballet of people in scrubs, not tights.

Things settled down and a plan began to form. They were going to make some changes on different medications and vent settings to see if it made a difference with the copious amounts of blood coming out of his lungs.

ECMO seems to be on the back burner because he isn’t stable enough for it. That may be revisited.

In true Ethan form, he was busting through all the sedatives and paralytics. He even depleted the amount of  opioids they had available on the floor for all the kids. It was said to the nurse by the pharmacy “that’s all we have in house.” Not sure what that means but fresh kid.  Just to clarify a lot of his sedation is cleared through the kidneys and now he has impeccable kidney help with dialysis. They think that is clearing things more quickly.

This morning he was sort of holding steady when I woke up. But he started to drop his oxygen again. He has been deemed critical. They are worried about him having a cardiac arrest. They need to stabilize his pulmonary hypertension so they can start removing fluids through Janice. He has been teetering “crisis” all night.

Doctors are parked outside our room. He is essentially drowning in his lungs. He is number one priority today.

(He is my number one priority everyday).