For the past several weeks...maybe months...Elise's doctors at Texas Children's Hospital have said that we would soon begin to see significant complications of Elise's liver disease which would "stack the cards" or "up the ante" and ultimately pave the way to Elise receiving the liver transplant that she needs. True to their fashion, they were right, and that became very clear this past Saturday morning, March 9-- my birthday.
On Saturday morning, as I woke up to Elise screaming into the monitor, I said to David, "we should go to the rodeo today." As I walked into Elise's room to get her up, I knew what I was about to find just based on the smell. Then it was confirmed. I picked up my baby, whose diaper, clothes and sheets were soaked in dark black bloody stool. She was obviously having a MAJOR GI bleed. For the past two weeks, I had been noticing some intermittent black, tarry stools. But each time, I brought her in to the hospital for labs, and her blood counts were confirmed to be within normal limits, so we were sent home. I knew this time would be different though. Strangely enough, I didn't really panic; we would not be going to the Houston Rodeo like we planned, but THIS was certainly "not my first rodeo." We called the GI/liver team at TCH and drove Elise straight there. With ziplock bags of the bloody diapers in tow, I marched Elise straight in to the ER and insisted that we go through the "rapid treatment area," as this was obviously an emergent, high-risk situation. For the first time ever, we actually bypassed the medical students, residents, and fellows, and we were immediately seen by the ER attending physician. She wasted no time in ordering a slew of lab work including a "stat H&H"- hemoglobin and hematocrit- i.e. blood counts. Her hemoglobin had dropped to 6.8, which was critically low. As a result, Elise was admitted to the hospital under the care of the GI/liver team and received a blood transfusion. She was also started on IV meds including a Protonix drip to help with acid in the esophogus and Vitamin K to help with clotting. They drew labs ever 6 hours on Saturday, Sunday, and Monday, monitoring Elise's blood counts very closely.
Yesterday, on Monday March 11, the director of our liver center and current attending hepatologist, Dr. Shepherd, took Elise down to surgery to find and treat the cause of the bleed, which he suspected would be esophogeal varices--basically, varicose veins in the esophogus that can burst and bleed. As David and I sat in the OR waiting area, I didn't pray that they would find a beautiful esophogus; I prayed and trusted that Dr. Shepherd would indeed find the problem and FIX it! The procedure took about 1 hour, and then Dr. Shepherd came out to explain the findings to us, and he brought pictures. He said that he found three large varices in the esophogus, including the "big bleeder" which was causing all of the problems this past week. In the pictures from the endoscopy, we could see the protruding veins and bloody residue. He explained that the "sclerotherapy" was successful- he injected a medication into the offending veins, which caused them to constrict and collapse, thereby stopping the bleed...at least temporarily. PRAISE GOD!! Of course, this sclerotherapy would need to be repeated at least every few weeks to prevent additional bleeds, but according to Dr. Shepherd, he feels that Elise will receive her new liver before additional sclerotherapy is necessary. He told us that as a result of this procedure, they have documented the esophogeal varices, which is the "last and most severe complication of portal hypertension secondary to the Biliary Atresia; it is absolutely life-threatening and will not be cured without a liver transplant." This has given the team the clinical support needed to increase Elise's PELD (pedicatric end-stage liver disease) score and attain a national listing status, which will allow Elise to receive liver offers from regions other than our own.
This morning, prior to Elise's planned discharge, I was sitting with Elise on the sofa in our room, ruminating over incidental issues. Just as I saw the shadows of feet at our door and wondered which of the bright new enthusiastic residents was coming to complete his/ her assessment prior to the team's rounds, I was stunned....my thoughts momentarily stopped....in walked the transplant surgeon, Dr. Goss, and he came in like "a man on a mission. His objective was to take a look at Elise's abdomen. He commented, "Nice...she's a good size!" Then he asked whether I had any questions. Bad idea. I decided to narrow down my questions to just one: "Are you here to 'eyeball' her because you have an offer on a liver for her??" He said "No, but we're going to find a perfect liver very, very soon." After he left the room, Dr. Shepherd and several other members of the liver/transplant team came in and talked to me for quite a while. They said several times, in several different ways, that "it won't be long." I even got a much better timeline than I have ever been given before. When the transplant coordinator scheduled our follow up appointment for March 27, 2013, Dr. Shepherd chimed in, "But Elise should actually be inpatient post-transplant by then; you probably won't need that appointment, but it is a formality."
So, over the past 3-4 months, Elise has encountered several bumps in the road: an episode of "acute on chronic liver failure," cholangitis, an unexplained high fever, and now esophogeal varices resulting in a major GI bleed that dropped her blood count to a dangerous level. She is definitely "upping the ante." While this all scares me, and it hurts me to see her getting so sick, I am also much more at peace with the plan for her. I have struggled with the idea of handing Elise over to the transplant team for surgery, not knowing what the complications may be, and whether I will ever hold her giggling little body again. It has now become very clear that there is no question of making the right or wrong choice; transplant is the only option.
Okay, well, I could go on and on, but I am officially exhausted. Here's to hoping and praying that the subject of my next blog update is very good news.
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