Lack of sleep and the uncertainty of the hospital schedule is really throwing Oscar for a loop. His free flowing tears and argumentative tone had most people assuming he was in serious pain, but the real challenge was the sleep deprivation combined with uncertainty around medications, the constant flow of doctors and nurses, and a room change. We’d make a plan to go for a walk and end up with a chest xray. He’d start to take a nap and be woken by physical therapy. Plan to play on the iPad and find three residents and an attending there ready to remove the chest tube. I’m certainly not complaining — the care has been skilled, thorough and compassionate, truly top-notch. I just hadn’t anticipated that the most challenging piece of Oscar’s hospital stay would be helping him navigate Hospital Time, as we’ve started to call it. He just doesn’t have his usual resources (structure, sleep) in place to help him stay flexible and regulated.

On the up side Oscar has had zero pain. I’m gathering this is rather unusual but I hope it stays that way. He is also the talk of the pediatrics floor with his speedy recovery and swift transition to walking! One MD shared that kids come from all over the world for this procedure (who knew!?) and that Oscar is at the front of the pack in terms of recovery. He fit in three good walks today along with a long period of sitting upright in his chair visiting with his cousin Audrey. At one point I stepped out of his room for a second to talk to his nurse, heard him call my name and turned to see he’d gotten out of bed alone and opened two heavy doors to find me. (Not advised, I am sure!) His chest tube was removed, he’s no longer in the ICU, and tomorrow we’ll wean him off his epidural pain meds. All good stuff!  So let’s just hope that he (and Paul) get a good night’s rest tonight so we can get through a day of Hospital Time with a little more ease.

Now for the photos! Oscar with his IV pole and shift workers (me, GrandMary, and Paul) and, above, a selfie with Audrey too who definitely brightened Oscar’s otherwise grumpy day.