Over the course of the past couple of months, JJ has continued to spend time both in and out of the hospital. Hospital stays were mostly due to viruses and/or infections. He has been home now for almost 4 weeks, which is something to celebrate! 

Infectious disease follows JJ closely, as he continues taking medication to treat and ward off fungal infection, with a planned medication completion goal of June. Oncology continues to monitor for signs of PTLD. 

Ultrasound has shown an increase in JJ’s portal vein velocity, which means his Dr. will need to place a stint in his portal vein. His Dr. is allowing more time for physical growth and will place the stint when absolutely necessary. 

Nick and Christina did have a liver rejection scare last week when JJ’s liver lab values were elevated outside of normal limits. Thankfully, repeated lab tests showed that his values were trending back down to appropriate levels. His team is unsure why that happened. We are grateful for better lab values now!

Jackson has been able to come off of 7 of his medications and is currently down to 6 medications per day. He is so close to being able to have his NG tube removed, since he has  increased his formula and oral food intake! He is crawling, pulling himself to stand, walking along things and overall making huge progress physically! His mom says his first word was definitely Ellie, (one of Nick and Christina’s dog’s name).  JJ is just over 9 months post transplant!

We thank God for his continued guidance and protection over Jackson as he heals from his liver transplant. We thank all of you for your continued support.