While it wont give answers right now, Im surprised a full genetic work up hasnt been done. They could start with a targeted gene panel for immunodeficiency and or lung problems. In genetics having multiple seemingly unrelated issues is a GREAT reason TO GET testing not a reason to avoid it.I have seen kids recover from ARDS but its long and slow. Getting a second opinion is always your right, but jt doesnt sound like they could move him. Youre doing everything right for him. Im so sorry youre going through this.https://www.reddit.com/r/AskDocs/comments/13g4w5i/6_year_old_dying_from_ards_all_labs_are_negative/jjz5icx?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_buttonThey did the work up
This makes sense to me, as the one case I have personally been involved with with a severe CMV viremia was a child with IgA deficiency, CVID, and bronchiectasis. I also sounds like he has had some chronic health issues in the past so it fits that some/all of this is connected. No specific clinical advice from me, but Ill be praying for your boy!