Day +3

Last night was terrible. Something is definitely wrong with my baby. She dozes for a few minutes then wakes up crying so hard she shudders. We’ve tried giving her extra morphine but it isn’t helping much. She is puffy and looks to be retaining fluids, despite an extra dose of diuretic. It was a long night, often I laid in the bed with her to try to comfort her a little.

This morning the doctor told me that her Tachrolimus levels are too high. Tachro is one of the "anti-rejection" type drugs. It explains a lot of her discomfort. So we’re stopping the Tachro for awhile and will restart it at a lower dose. They have to kind of feel their way to see what her body will tolerate. We’re also able to switch back to Tylenol as a pain killer (it interferes with the chemo so we couldn’t use it for awhile). This should be more effective on her teething and bottom pain. Finally, it’s likely that she’s got mucousitis in her stomach (soon to advance to her esophagus and mouth) where there are canker-like sores everywhere. This is a result of very low white blood cell count and is pretty much a given with this process.

My lovely and talented friend Lisa Morris took some photos of Chloe shortly before we came to the hospital. You can view them here;
http://www.timestwocreations.com/html/little_miss_chloe.html