We headed to Riley on Thursday and we were hit with a ton of information and several appointments.We first met with Jaime’s transplant coordinator, who guided us through a packed day of appointments and explained the many tests and steps involved in getting Jaime listed for transplant. We also met with the transplant social worker, who was incredibly kind and supportive and will be involved in the transplant board’s decision making process as Jaime moves through evaluation.
One of the highlights of the day was meeting the surgeon who would perform Jaime’s transplant. He was extremely knowledgeable, has extensive experience performing liver transplants, and has cared for many children with biliary atresia. He spent a great deal of time with us, answered every question we had, and helped us better understand what the transplant process could look like for Jaime.
We also met with Jaime’s liver doctor and dietitians. We discussed Jaime’s referral to First Steps, and his doctor agreed it was a great idea. Because of everything his little body has been through, biliary atresia can impact certain areas of development, and First Steps will help ensure he has access to any additional support he may need along the way.
One concern discussed during the appointment was Jaime’s increasing abdominal distention. His liver doctor believes a significant portion of his recent weight gain is actually fluid buildup, so he will be starting a diuretic medication to help reduce it. We also adjusted his feeding plan to make sure he is meeting his caloric and nutritional goals.
After a long day of appointments, Jaime completed his first round of transplant evaluation bloodwork and a chest X-ray. We are currently waiting to hear back about his lab results.
While the day was exhausting, we left feeling thankful to be moving forward in the process of getting Jaime listed for transplant. We still have several tests ahead of us, including a CT scan, ultrasound, EKG, echocardiogram, and more bloodwork on Wednesday.Please keep Jaime in your thoughts and prayers as we head back to Riley for another busy day of testing this week.
