New Developments

So, since my last post, a lot has transpired related to Elise's condition.

On December 13, I noticed Elise's abdomen was more distended than usual, so I put a call in to the transplant team. The transplant coordinator immediately called me back and asked me to bring Elise in to the ER at Texas Children's for further evaluation by the liver team. Well, after 8 hours in the ER which included lab work and an ultrasound, the liver "fellow" on call apparently did not think it necessary to see Elise in th ER and examine her.  I was LIVID, so say the least, since it was the primary liver specialist who instructed us to come in to the ER for examination.  If I wanted an ER doctor's opinion, I would have taken her to our local hospital. After I expressed my concerns....very emphatically...and refused to sign discharge papers until she was examined by the liver team, I got a phone call in the ER from this liver team "fellow," who stated that he had carefully looked over all of her labs and ultrasound, and he felt that to admit her to the hospital would do more harm than good, as there was nothing that could be done to intervene at this point.  Basically, he indicated that she would have to get worse.  Not exactly what any mother wants to hear....and especially not over the phone.  So at this point, I signed out of the ER and took our little Elise home.

Now....most of you who know also know that it wouldn't end there.  I got home around 11:00 pm, sat on the edge of my bed, and typed out an email to Elise's primary hepatologist, with a copy sent to the director of the TCH liver center. I included pictures of Elise's abdomen and a detailed explanation of my concerns.  Her doctor called back early the next morning and explained that he received my email, and he apologized, stating it was never his intention for us to leave the ER without being physically examined by one of the liver docs.  In any case, he further stated that he and several other liver team members reviewed Elise's labs and ultrasound from the night before, and assessed her recent trends.  He noted that it appears blood is being pushed away from her liver, which is contributing to some of the tummy distention and will ultimately lead to cirrhosis taking over her entire liver.  He said that Elise seems to be declaring that "it's time" to move forward and pursue transplant much more aggressively; the paperwork was being done to request a higher PELD score/ placement on the liver transplant wait list. 

Several days passed, and on December 19, we saw the liver/transplant team at TCH for "liver clinic." According to her doctor and the transplant coordinator, her PELD score is now 28, placing her at fairly high priority....meaning we could literally get "the call" any day now, and Elise could get a new liver....although it could still take several more weeks.

We have faith that the the perfect liver will come for Elise at the perfect time. 

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.