Well, this has been one LONG week. Elise was admitted to the Texas Children's Hospital on Monday 7-10-12 with a high fever of 105.4. The major concern was Cholangitis a serious liver infection. She was admitted under the care of the TCH liver team and immediately started on IV antibiotics Vancomycin and Zosyn to treat for Cholangitis while doctors ordered tests including labs, viral studies, an ultrasound, and an x-ray to rule out other causes of the fever. Upon admission, the attending physician explained that they could not send Elise home on the bet that this was not Cholangitis and risk further damage to Elise's liver. We agreed of course. (click "Read More")
Once we got settled in, I was told that they would consult the liver transplant surgeon, Dr. Goss, to see Elise while she was in the hospital. I was hoping he would indeed come to see her, but based on previous experience, I suspected that maybe some other surgery resident or member of the transplant team would come to see her in his place. We have been seen by everyone else on the transplant team during the evaluation process, but not HIM--the liver transplant surgeon--the "wizard" as we sometimes refer to him. So imagine my surpise yesterday when Dr. Goss walked into our room, accompanied by his entire team....quite the "posse!" It was actually very overwhelming and somewhat intimidating to see Dr. Goss himself, in the flesh, and the entire liver transplant team standing before me, all at one time. For the first few moments, it seemed like all I heard was noise, but I believe he said, "Hi, I'm Dr. John Goss, and we are here to meet Elise and answer any questions you might have." Well, he certainly came to the right place if he was looking for questions. And the answers I was looking for???? I got them. Dr. Goss made several good points. To summarize, he agrees with the liver team physicians that Elise needs a liver transplant at this time, primarily due to failure to thrive, but also based on her suspected portal hypertension and history of Cholangitis. He also notes that although her PELD score (pediatric end-stage liver disease) score currently remains low, the team could get at least 24 exception points for her at any time based on her presentation and history, which would place her at high priority to receive a liver. However, Dr. Goss recommends they just "hold the cards" for now and wait to request those additional points, thereby affording him the opportunity to "shop around" more for a pristine organ--an absolutely perfect liver for Elise. And, now that Dr. Goss has seen Elise personally, he knows exactly what he is shopping for!! So anyway, Dr. Goss left me with the feeling that they are going to see to it that Elise gets her liver transplant when she needs it, while she is still healthy enough to do well through the transplant operation...and he has no reason to suspect any negative outcome of complications. In regards to complications, I started to ask about the potential complications that all "liver moms" fear such as rejection and Post-Transplant Lymphopfoliferative Disorder (PTLD), but Dr. Goss sort of cut me off and reminded me not to get ahead of myself. I then pointed out that these are very serious and anxiety-producing fears over which I can't help but obsess, especially since just a few rooms down the hall, one of our little "liver friends" was being diagnosed with atypical rejection, possibly chronic rejection--how devastating for this family who who has been celebrating as he thrived more than a year post transplant!! According to Dr. Goss, what he knows for sure is that Elise will die without a liver transplant, and any complication that arises post-transplant can be treated and effectively resolved.
So, after a few days in the hospital, Elise is now back home with us. She was discharged now that her blood cultures have been negative x 48 hours, her fever is gone, and her liver enzymes are back down to her baseline. She will be on oral antibiotics for the next 10 days at home, but at least we're home!
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