So the on call nurse was not a pediatric nurse. She recommended the ER to access the port and I had some meds left from last week to start her IV's back. So we did that. The ER for the access and the blood cultures, and now she's home with her first IV running. If her fever doesn't come down by tomorrow night, or goes over 104 again, we will have to go to Duke. For now though, the assumption is we are dealing with the same bacteria over and over, and so we are doing a long course of Gentamycin and Zosyn by IV's.
Jen, she is 5 and she has Alagille syndrome which basically means she needs a liver transplant. But because she also has severe heart defects, not completely repaired, and because she got no medical care for the first three years of her life in China, she has many things wrong that normally would not be wrong even in a child with those two major things going on. She suffered severe malnutrition, and to this day only weighs 26 lbs. She will be 6 on the 27th. They will not list her for a transplant until her heart is repaired because they say she will not survive a transplant. And her heart can not be repaired until her pulmonary arteries grow enough. But that can't happen as fast as we'd like because of her liver which messes up her metabolism. It's a catch 22. So we are walking the razor's edge of pushing her body and correcting as much as we can to make the liver last as long as possible and hopefully get us a few more years for the pulmonary arteries to grow. It's hard sometimes because I second guess myself when we push her like this and complications like the infection she has now keeps cropping up. This infection is an enterobacter cloacae, which is pretty difficult to treat in some people once it gets a hold on them. We've been dealing with it for about 6 weeks now.
Thank you ALL for the prayers and support. It looks like we are gonna get to do this all mostly from home and not have another stay at Duke, hopefully. On the happy side, Make A Wish has approved her wish and she's getting a huge nice playhouse this next month. She's going to be so surprised!
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