8 month old with chiari I ?????

Paul was 5 weeks premature and we were told he was going cto be a dwarf (achondroplasia). All genetic testing came back negative, but he displays evidence of dwarfism. When he was 9 days old he developed necrelizing enterecolitis and was in hospital for 5 weeks, when he had a lot of complications, which included blood clots, blood loss, blood transfusions, and almost three weeks on TPN. He is anemic, extremely hypotonic (cant sit up or hold his head up) and in
May he had a VP shunt placed for hydrocephalus and was diagnosed with chiari I and we are having the decompression surgery after the first of the year. Has anyone had a child go through that surgery? If so, what can I expect. Everything is 50X worse with Paul (for example, he got the stomach flu and was hospitalized for almost 2 weeks) He has spent half his life in the Children's Hospital, but they love him there. I just don't understand why they can't figure out what's going on with him--he has nine doctors & therapist

omg thats so sad im so sorry i hope it turns out ok!!!
good luck paul!

tldnr

well i have been thru about 75+ surgeries in my life and i had a friend who had chiari also. just make sure he gets all his meds. and watch out for morphine. itis extremely addictive. not much else you can do. just stay on top of nurses. they have lots of other patients to deal with.