Not much to tell...we are just settling in home like we have been trying to do!
The first outpatient visit Cecilia had, they took her off Spiranolactone and changed Lasix to be twice a day instead of 3x. Since then she is back to having intermediate tachypnea...same thing that stalled her discharge. We went to see the Cardio yesterday and he said that he had planned to wean Lasix and Enalapril but because she was breathing so fast in clinic he decided against it. We go back in 3 weeks and he will most likely make the adjustments at this visit. He thought (as well as another Cardio while we were inpatient) that she was overdosed on Enalapril since her function is normal and by echo it looks like her surgeries went good. He was asking me questions because he didn't understand why her dose was so "high". Well I don't know...I was not given a ton of info about Cecilia's heart before... They mostly just said "its good" without talking about many specifics. I was looking back in her records that I have, and in her CT report from August it said there was something found suspected to be vegetation on her Aortic Valve due to her positive blood cultures... so I asked what did that mean? And Her doctor said that is Endocarditis and would be very bad to happen in a person with her condition, and asked me to bring this document with me next check up. His goals for Cecilia I think are that he would like to significantly lower her dose or maybe take her off of Enalapril and Lasix altogether. I'm very nervous about that. She seems like she has been working harder since the last wean and I don't like that.
Next up, we will be busy with Home speech and physical therapy, GI check up, Neuro development, and our social worker is coming over for a visit too. Since she did not have her 6 mo check up this week like I thought she would, I'm assuming that will be next week. And the kids only have 1/2 days of school next week! Lucky Me! :) hehe
The older girls are doing great. Gina was sick, and it seems like Julia is starting to get it now. Well here are some pictures from this week: