human
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.
gpt
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.
I get this vibe a lot too, and I try to bring up questions, but then I get talked down to for asking in the first place
A big part of medicine is learning to read research and interpret the results. You can find a study showing practically anything (one that springs to mind shows no benefit to wearing a parachute vs not wearing one when jumping from a plane). That doesn't mean the information is valid, or valid in the slightly different context to which it often tries to get applied.Doctors generally appreciate an interested and engaged patient very much. We don't appreciate someone who thinks they know better, especially if there are some obvious, fundamental gaps or flaws in their knowledge. These knowledge gaps may not be addressable in a reasonable time frame, so many of us won't bother to try.We (usually) aren't just gatekeeping treatment, there are sometimes significant potential harms from engaging in whatever revolutionary therapy has been suggested online.Actual expertise can sometimes be indistinguishable from ego, depending on what you go into the consult looking for.