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.