Pins & Needles

I meant to update last night, but I obviously didn't get around to it. Yesterday, I brought Elise back to TCH for another hemocult. Unfortunately, the results are still positive for blood in her stool. In the absence of Elise's primary hepatologist (liver doctor), the director of the liver center reviewed the results and states that Elise likely has a small, slow bleed high up in her esophogus. Because her hemoglobin levels are still within normal range, her condition is not critical. However, she will go back for more labs next week, and if her blood counts drop significantly, she may require admission to the hospital for a blood transfusion. In the mean time, I'm supposed to monitor her closely and "bring her in right away if she vomits blood or produces bright red blood in her stools."  As if they had to tell me to bring her in to the hospital in such a case.  

Anyway, I normally like to post cute, sweet pictures of Elise. But for the purposes of this blog entry, I am including a picture of her which shows her protruding belly, which is becoming more and more distended these days. She is about as physically comfortable as I was when I was 8 months pregnant. Even still, she is almost constantly smiling, which really amazes me. I worry about her developmental milestones though. For example, she is still not walking at 16 months old. Her doctors and physical therapist tell me that it is likely her big belly on her small frame which is to blame; they say she will catch up quickly post- transplant.

Transplant. The primary focus of my daily thoughts. Considering the most recent developments and progression of Elise's liver disease, her treatment team is planning to request additional exception points on her PELD (pediatric end-stage liver disease) score, thereby heightening her placement on the transplant wait list. With her current score though, she is already "next" in this region for her type/size liver, so the increased score will not actually change her status at this point. 

So towards the end of my conversation with the doctor yesterday, I asked, "So, regarding this esophogeal bleed, I just have to sit around and wait for it to get worse before anything can be done?" In not so many words, the response was "yes." Actually, what I was told is that these problems that Elise is now incurring are very concerning but not unexpected with Elise's diagnosis. These are the very reasons that she has been listed for a liver transplant. The team has prepared well for his, which is why she is now sitting at the very top of the transplant wait list at the time when she is becoming more ill. Again, I heard the words that I have heard time and time again. That is, Biliary Atresia is a progressive liver disease which is fatal if not effectively treated; her liver will not get better; in her case, the only effective treatment is a new liver. So that is what we await and pray will come very soon.