Harvesting Joy

Yesterday we finally got the Sirolimus level back from Mayo. It was about half way to the target band, so his body's clamping down to slow leakage of fluid (albumin and other proteinacious fluid) out of his vessels into tissue. This is good news. His body is responding to therapy at a low level so hopefully we'll get a more aggressive response in the optimal therapeutic band. He was doing really well yesterday, basically living for several hours without ECMO gas exchange assistance (breathing just on the ventilator). We were actually hopeful this morning that he might be pulled off ECMO, but now we're not so sure. His chest x-ray showed right upper lobe atelectasis (collapsed lung) and moderate effusion in the left lung. So we're doing another bronchoscopy this morning to try to open the right upper and they're just about to fiddle with the left chest tube to promote drainage...hopefully he doesn't bleed (lots of blood thinners on ECMO). Two steps forward one step back. There has been an outright ban on Enya in his room, so we're not sure what's driving the slight regression...did the Twins lose last night? Maybe there was an economic report, a jobs forecast, some news blip on the radio last night. Anyway, today we're praying for better chest tube drainage on the left, clear lungs, and ECMO removal.