Back Home Again

We just returned home today from another stay at Texas Children's Hospital. We were there for the past 3 days following Elise's bilateral re-implant surgery--the operation recommended by her transplant team to correct a kidney reflux which threatened to cause problems post liver transplant. We were expected to only be there 1 night....but of course that turned into 3 days.  (click "Read More")

Following the surgery, urology quickly signed off the case, and the liver team admitted us to the GI floor at TCH in order for them to closely monitor Elise's condition and take good care of her liver. Unfortunately, Elise's liver didn't handle the operation itself or the medications during and after surgery all that well. It took Elise more than 24 hours to become fully awake and alert after her last dose of Morphine. As the liver doctor explained, her liver just had a really hard time processing those narcotic meds. They also had to discontinue her IV fluids sooner than they would have liked because Elise's body was having trouble getting rid of it.

And then came the lab work. The doctors said that her liver function tests are dropping lower and lower, which essentially means that her liver is "packing up." Dr. Ross Sheperd, the director of the TCH Liver Center and widely respected expert in Biliary Atresia, commented that they would have expected to see her GGT spike immediately following surgery, which would have indicated that her liver was working harder in an effort to recover. But, in Elise's case, her GGT just continued to drop following this surgery. On a good note, the doctor did say that, through this "test," her liver has proven that it has a a little fight left in it....that a small portion of her liver appears to be doing all the work and getting the job done, which gives us some time to get our ducks in a row, etc.   In response to my question about a "timeline" as to what we should expect, the doctor said that when the GGT reaches the point where it is lower than the Alkaline Phosphatase, it is usually a marker that the patient will need a transplant within 3 months, and that is where Elise is right now-- as of today, her GGT is 278, and her Alkaline Phosphatase is 325.