I have been in ems for about 6 years now and I had a grandson born a year ago that was born with a condition that will take his life by the age of two and he just turned 1. the condition is called Miller-Dieker Syndrome I hope you look this up and see whats its about...What i can tell you because I deal with him each day is that he has seizures everyday 5 or 6 he is on 2 seizure meds and other meds to keep him relaxed he doesnt swallow he is fed thru a feeding tube in his tummy all meds are put thru the tube he has more fluid than brain and the out come is death no matter what we have hospice to help but time is now short he has made it to his first birthday and has been taken back to the hospital for comfort care only....He will come home when he can be off the 02 for 24 hours its hard having to take him alot in the ambulance but i wouldnt have it any other way...so we have had to train all the services close to us on what to do for him and how to do his meds thru the tube and the whole nine yards..anyways just thought i would add my tow cents worth... Tiny Emt
