Luckily Davis is not a quiet escape artist. Yesterday at 4 am I woke with a jolt to his distinct “make my world better!” growl and made it over to stop him from pulling off tubes and scooting toward the edge of the hospital bed. His legs are not stable enough to keep him safe upright without assistance. This morning he let me sleep an extra hour and did not attempt his bed break until 5 am. Even in a deep sleep I am attuned to his verbal cues and can get to him before he gets to the edge of his bed. I doubt he could crawl over with rails up, but he is a force to contend with when on a mission. Because he is not a quiet escaper, his nurse and other staff run in almost as fast as I move to him. Gotta love that growl of a voice.

Fix-my-world is his constant call when his pain medication wanes. Soon, I tell him. Soon.

More fluid from his chest tube fills the storage device dubbed an atrium. This batch a bit pinker from the medicine used late last night via his chest tube to get to those darn encapsulated pockets that seem to dodge the antibiotics. Will more fluid fill in? This has been my question that cannot yet be answered. Only an upcoming cat scan will show us if the fluid rebuilds. Or if he will need surgery. Or if maybe, just maybe, we can go home.

Home is another problem to solve as we live at 8000 feet. Here at sea level he requires 6 liters of oxygen to maintain even low oxygen saturation levels. Can this happen again? Yes. Aspiration pneumonia is taking a toll on his lungs. I reach out to another mother with a child like Davis and hear new medication words and a return to albuterol treatments. Anything to try before exploring the next big option: tracheotomy.

This is what it is. Waiting. Hoping. Remembering this boy wants to be back to trike the trails of summer in the Sierra. Not sure when…yet.