Yesterday's clinics

Shelby, Dr. Superina (transplant surgeon; performed her Kasai procedure) and her beloved Dr. Jill

Yesterday Shelby had Cardiology and Liver clinics. Cardiology was lllooonnnggg as she needed an EKG (quick) and and Echo (lloonngg!). We had a 10:40 appointment and we finally saw the doctor around 12:30! Yup, that's clinic :-( We ran downstairs for a quick lunch and then got into Liver clinic early. Of course, we were still there for 2 hours! Her labs drawn earlier in the morning showed that her wbc has remained stable (good!), but her ammonia level is elevated (bad). We had requested that they check it because Scott and I have noticed some changes in Shelby the past month - forgetfulness, easily irritated, spaciness, confusion - not all the time, but enough to be concerning. This is called Hepatic Encephalopathy. It can be very serious, but Shelby's is mild right now. She needs to be a on med called Rifaximin, but insurance is questioning the need for it because it is very expensive ($600 for 1 month!). Her "liver" numbers are holding at just about *normal* normal and she is growing like a weed....so they are not looking at transplant right now. Its such a double-edged sword, her whole situation. She's having so many *mild* side effects, but combining them all together makes for a lot. I'm glad she is doing as well as she is, but how much is enough? Labs will be repeated the beginning of August to check on her wbc and ammonia.