While Reese was in the hospital in late January due to a virus, his EBV level came back extremely high which was concerning because this can indicate something called Post-Transplant Lymphoproliferative Disorder (PTLD), a rare cancer that can develop post-transplant. As Reese was still fighting off the virus at the time, his doctors decided it was best to put off the CT scan to check for the PTLD further until the virus was gone so there was no confusion in the enlarged lymph nodes he had at that time. He had the CT scan on February 14th and everything came back clear, NO PTLD!!
On February 28th, Reese had a follow-up appointment regarding his bile duct drain. After checking the opening of the bile duct, his doctors decided it wasn’t quite where they wanted it to be and the drain needed to stay in place for another 6 weeks. Feeling a little defeated, yet understanding, they headed home to tough out the next 6 weeks.
Only a week later, March 7th, Reese developed a fever of 104 that took them back to Chicago. Over the next several days Reese continued running fevers off and on, some reaching as high as 105. As you could imagine, he was absolutely miserable. Test after test and lab draw after lab draw, his doctors could not figure out the cause of the fevers. To rule out every possibility, Reese was evaluated by oncology, cardiology, and infectious disease and all found nothing concerning and cleared him. He also had another CT scan to rule out PTLD and thankfully that came back clear again.
On the 17th, Reese’s doctors wanted to make sure that his drain was still working properly by flushing it with dye and found nothing to be wrong with it. After all the consults, blood work, cultures, CT scans, and procedures his doctors are still unsure of what is causing the fevers and decided it was best to let Reese ride it out at home!! As of now, they will head back to Chicago for lab work and Liver Clinic next week. Mom and Dad will continue to monitor his temperature at home and if it reaches 103-104, they will head back to the hospital. Reese has another follow-up appointment for his drain on April 11th and we pray they are able to take it out at that point (This sweet boy misses splashing and kicking in his bathtub!)
This little guy has been through so much already this year and still continues to show us how strong he is. With yet another disheartening and stressful setback, Ron and Lexi are exhausted in every way but continue to stay strong and fight for Reese. As always, we thank you for all the continued support, love, and prayers. They are very much needed and appreciated!
