I am so sorry to hear about your son, and I pray things will be good for him and you. Your husband seems like a pretty cool dude, even though you guys are experiencing heartache at the moment he still want you to pursue your wish. I work at a pediatric hospital so I see a lot of sick babies, but those same babies go on to get better and live good normal lives. Just stay strong and know you are not alone and this to shall pass.
Onika