What led to your son having a port?I am sorry this is happening. Has your boy been evaluated for HLH (hemophagocytic lymphohistiocytosis)? ARDS is not a common manifestation of this, but considering the situation of runaway inflammation and that it is occurring in the context of CMV infection, this has to be considered. You can see inappropriate immune stimulation co-occurring with frequent infections and immune deficiency due to there being a milieu of overarching immune dysregulation. Texas Children's Hospital and Cincinnati Children's Hospital are particular specialists in treating these syndromes. I doubt that transfer of a patient on ECMO is possible, but those facilities may at least be able to provide some guidance.
NAD but a fellow ICU mom. Been in twice for my 2yr old and multiple hospitalizations in between. Its a very scary place. Just wanted to say I feel you and hope for a good outcome for your little fighter.