Geeeeeeeeet dis gownnn OFF!

Sedation medicines turned off, bed put in the upright and locked position, respiratory team alerted, mom focused with cute "wake up sweetie" phrases, dad focused with more manly statements and Drew - well, he was sedated. Many hours later the medical team decides it's time to pull the tubes out. Tubes come out quickly without a problem and the room is full with anticipation waiting for Drew's first full breath, cough, and word. Breathing and coughing ocurred on cue and his first words took a little time: "Geeeeeeeeeeet dis gownnn OFF!" The ICU hospital gown is still very much on and will be until he is moved back to 9200 - Adult Bone Marrow. We fully expect Drew to be transferred in record time. He is talking, opening his eyes, and starting to move his hands and feet again.

Sitting in ICU by Drew's side for the last week was interesting - to be able to see all of your son's body systems on display. Every heartbeat is graphed, the exact volume of every breath is charted, totalled, and compared against history. Pulse, blood pressure, oxygen in the bloodstream, and even weight are not just tested but continuously displayed, updating every few seconds. The contents of all outputs are on display in plastic containers (don’t visualize that one, please). All the input fluids are visible on the IV poles, with their names and dosages parading across the pump screens like the news in Times Square.

Every setting has a range, and every range has an alarm if it is exceeded. We learn when to act and when to watch. We know how to reattach the oxygen monitor, silence the IVs, and ignore the dose-complete beepers. We also know when the alarm volume goes up and the alarm sounds change: we pull closed our laptops and shrug up against the wall waiting for the room to get crowded. When Drew was very sick last week, we watched people turn knobs and increase drip rates and adjust settings that turned crisis into calm in seconds. Those days have passed. We are almost out of ICU.

We are not changed by this medical avalanche of data and terminology. We are taking care of ourselves: we still intake nutrition at regular intervals, we auto-diurese, and we maintain muscle flexure at nominal age-appropriate rates. We just talk funny now.

Day 26 post-transplant means Day 35 since we checked in to the bone marrow hall at DUH, and Day 41 since we came to live in Durham. On a perfect schedule, we would be moving to the clinic and have much easier days starting soon. Things still are not perfect, but Drew has reduced his number of tubes, reduced the need for life support machines in the room, and grown lots of white blood cells - life is good.