Caring for Ximena for more than 600 days

When Ximena MolinaParra arrived at Texas Children’s Hospital in October 2018, she was in liver failure. The baby with a full head of dark hair was in desperate need of a transplant, and a few days before we rang in 2019, she underwent the life-saving surgery. I met her and her mom, Yaqueline, just a few days later, never imagining that I’d be walking alongside her in her hospital journey for more than 600 days.

As a physician assistant (PA) in the Department of Surgery at Texas Children’s, I work for the abdominal transplant surgeons and work closely with a host of other care team members. My primary role is to not only have extensive knowledge about liver and kidney disease, but to be able to quickly identify any post-surgical issues that may arise. I alert others on the care team so we can work together to prevent those bumps in the road from impacting a patient’s course. Care management and education are critical, but the most important aspect of my role is communication.

As a PA, I serve as the point person for patients from the time of their initial hospitalization following transplant to the time they leave the hospital. Because I’m so intimately involved in each case, it’s so important that I communicate well and often with everyone involved in a patient’s care. This includes, but is not limited to, the surgeons, critical care team, hepatologists, pharmacists, social workers, dietitians, child life specialists and representatives from many other specialties. My role provides an important aspect of continuity that ensures that the entire care team knows what’s going on, and that we’re all working together to provide the best care possible. 

Following Ximena’s transplant, I saw her go through it all. As her primary provider, I witnessed the anticipated two steps forward, and a few steps back that oftentimes come with her condition. I saw her every day for so long that I was able not only connect with Ximena, but her family as well.

“Marielle was always very attentive with both the medical side of our care and with anything else they could provide to make Ximena comfortable,” Yaqueline said. “Ximena had three complications [after the transplant] and I am truly thankful to Marielle that she was always so considerate with Ximena. She was always ready and available to help and care for her. I know she formed a really special bond with Ximena.”

In the beginning, it was the smallest victories that seemed so huge. Ximena unfortunately experienced some setbacks, including needing support from a tracheostomy and dialysis, but those obstacles didn’t dull her smile and positive attitude. By the end of her stay, she was able to make noises over her trach, sit up by herself and would oftentimes be seen scooting around on her scooter or dancing to music. Ximena went from a tiny baby who was so sick to a strong little girl who loves dancing to Latin hip hop music.          

“We’re about to celebrate one month out of the hospital. After two years in the hospital, when the day came that it was possible for us to leave, I think the medical team was as excited for us as we were and to be honest we are so happy,” Yaqueline added.

As the transplant surgery APP team, Kelby Fuller and I are so proud of Ximena’s progress. National PA Week comes to a close today, and I am grateful to serve in a role that allows me to have such a tremendous impact on our patients’ journeys. It’s truly an honor to care for patients like Ximena, and her journey is one I will never forget.