My son was diagnosed with Biliary Atresia after 1 month old. He was jaundice 3 days after birth but Dr. Couldn't figured out for sure if he has biliary atresia until he was about 1 month and a half and a Kaisi procedure immediately after the exploratory procedure to diagnosed the disease. After the procedure he has leaking of the bile due to lose suture areas where the intestine attach to the liver. So they had to do another exploratory surgery to suture the lose old suture areas. ~5 days after the 2nd surgery we got discharged and went home. On that sane day my son got a fever and we went back to the hospital for cholangitis. 2 months later, last few days my son has fever again. His pediatrician and GI specialist kept on telling us that it's most like due to a viral instead of bacteria and told us to just take him home and continue to monitor him and check back with her 3 days later. However, that night after seeing the doctor my son starting to jerk and twitch and in the morning his temp increased to 105 peripherally. Finally we decided we just going to take him to ER and he was diagnoses with infection that now spread into his blood. I'm very nervous about not having the right medical professional who are always on top of this things so this won't happen again. I'm very scared and worry about his conditions. Is he going to live? Where do I go to find supports or expert in these field near where we live (Sacramento, CA)? Is there a support awareness group where parents of children with biliary atresia connect?
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