Can you believe this week makes 1 year since Elise received her liver transplant? It seems surreal to me. I vividly remember this time last year. I was living minute by minute, day by day....and I could not imagine that on March 19 of 2014 we would be at our 1 YEAR ANNUAL transplant review clinic. But here we are.
Elise and I spent most of the day today at Texas Children's Hospital, and I must say it has been a wonderful day! We started out having her labs drawn at 7:30 am. We then went to the West Tower 12th floor inpatient unit and visited with a new BA family--yes, we have a new baby boy in our "liver family," who is 5 months old and awaiting a liver transplant. It seems like only yesterday, WE were the new BA family at TCH. Anyway, the emotions they are feeling right now are all too familiar, and it just tugs at my heart. Anyway, Elise and I spent about an hour talking to them and sharing our experience and hope.
At 9:30 am, we arrived to clinic. We first saw our transplant coordinator, who reviewed all of Elise's lab results with me. She walked in the door saying "Her numbers look great!" Which immediately put me at ease. In fact, her "numbers" are some of the best she's ever had!
AST 54, ALT 56, GGT 24, conjugated bili 0.0, total bili 0.2, Albumin 4.8
Her CBC (complete blood count) and CMP (complete metabolic profile) are normal! Her Prograf level is 4.4, which is perfect (goal range 3-5.)
Dr. Fishman came in saying "She looks FANTASTIC! And BIG! What's she been eating, besides pennies?" Elise was seen in the ER this past Saturday after swallowing a penny. He was happy to hear that I "confirmed" the penny came out on its own in her diaper the next day. "Better you than me," he said. Haha. Apparently, Dr. Fishman routinely fishes foreign objects out of toddlers via endoscope. So yes, better it was me than him.
Anyway...moving on. Dr. Fishman had a medical student with him, so we reviewed Elise's entire history from age 6 weeks, when Elise was first diagnosed with Biliary Atresia. It was nice to hear Dr. Fishman's summary, although I'm quite sure I could not begin to summarize our experience in 3 minutes. Dr. Fishman then completed his exam and reviewed her current labs again with me. He and our coordinator emphasized the importance of this milestone-- being 1 year post transplant. They indicate that the worst should be behind us now, although there will always be the possibility of bumps in the road.
Near the end of our clinic appt, our dietician, Stacey, came in to review Elise's current "growth trends" and "dietary needs." Elise's current weight is 29 lb 15.4 ounces (75th percentile,) and her height is 2'11" (50th percentile.) Stacey advised us to switch Elise over to skim milk rather than whole milk, no more than 20-24 oz. per day. She needs to have a well balanced diet high in protein and veggies and low in sugar and fat, with fruit for snacks. These recommendations are meant to keep her new liver nice and healthy and functioning at its highest potential.
After clinic, Elise had her LAST pentamidine treatment. She was required to take inhaled pentamidine treatments once/month for 1 year post transplant to prevent PCP, a very dangerous type of pneumonia. She never really fought the treatments, but it's nice to be relieved of them now.
We ended our day at TCH by meeting up with our very good liver friends, Tara and Abby. Elise and I waited with them for Abby's labs, which gave Tara and I lots of time to chat and catch up while Elise and Abby built a lego choo choo train. Then we all went down to the food court for lunch. Dr. Fishman and Stacey would be proud to know that Elise ate grilled chicken and fruit with no complaints!
AND NOW....we are officially free to celebrate Elise's 1st Transplantiversary this Sunday, March 23. We've planned a special gathering of family and friends. We'll have a balloon release in honor of Elise's donor, Julia, and organ donors everywhere. As we know, "Without the organ donor, there is no transplant, no hope, no gift of life."
Thank you all for your continued prayers and support and for continuing to follow Elise's journey.
