@shadows_and_sparks I am so sorry about your kid. I would like to share a point of view with you, from someone who is training in neurosurgery in the US, so that if things turn bad you at least heard something I wish I could tell all my patients - and not ruin our relationship.
medicine is misunderstood as a gift or a blessing. we can 'resect the tumor', we can 'extend survival', we can 'treat your pain'. this is incorrect - it is always a trade. we can resect the tumor at the cost of being weak on one side. we can extend the survival at the cost of your time at home. we can treat your pain the cost of being an opiate addict.
this is exaggerated, and I would not be a doctor and love my job if I didn't think I could make good trades for ppl. however. there comes a time for everyone were there are no more good trades. in kids in particular, even your doctors don't want to see that until it's obvious and undeniable - this is the reason that I see kids suffer needlessly and die bad deaths in the hospital.
if medicine as no good trades to offer you, I encourage you to take your boy home. eat ice cream for breakfast, have grandparents over, and watch movies as a family, and no blood draws and no middle of the night imaging studies and no not understanding why a new team of doctors is coming to see you who are being coy about why they are there cuz something is different but teams haven't gotten together yet to circle the wagons.
wish the best for you and your family. please realize that medicine is always a trade and that with kids, your doctors might not tell you until all the trades are bad already.