JosephinesMommy
New member
So we have been very lucky to have a very "healthy" baby thus far. Yeah, she spent her first 17days in teh NICU after she had surgery on day four for her MI. 17 was a very short stay from what I have heard. BUT
Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??
Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.
I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.
Josephine had elevated liver enzymes at around 1m of age. She took Ursodiol (sp?) for a few months. Blood test showed lowered enzyme levels so the head CF doc told us we no longer needed to give it to her... this was 6m ago. Fast foward to our last appt. Our regular doc orders a blood test just to check her enzyme levels... Yep back up. The gastro doc wonders why we ever stopped... WTH??
Also, I was reading other posts about CPT and vests... I ask everytime and get told that until there is an issue they don't see an need... Is this right? Also, she is getting no inhaled meds either. Is this normal. She is culturing Staph but at the "rare" level, down from 1+ at the last culture.
I just want to make sure that I am giving her the best care possible... so that WHEN there is a "cure" she is in the best healthy possible.