It has officially been 6 months since we packed our suitcases to relocate to Nashville for Jack’s liver transplant and medical treatment at Vanderbilt Children’s Hospital. I honestly can’t believe it. What initially was thought to be a 3-month transition has doubled, and we still can’t provide an estimate on when we will be able to return home to North Carolina. Doctors will only clear him to return home when Jackson is healthy enough to be away from their care. So only Jack can determine how our remaining timeline will look...
So, what’s been going on with Jackson? Well first, he is currently back in the hospital. Yes, you heard me correctly. To date, he has been readmitted back into the hospital 13 times, and we are currently on Day 107 in-patient at Vanderbilt Children’s Hospital here in Nashville.
Since our last update, Jack has had several surgical procedures, tests and treatments including the surgical removal of his chemotherapy port due to infection, a liver biopsy, bone marrow biopsy, lumbar puncture, upper & lower GI scope, pulmonary scope, ENT scope, EEGs, blood transfusions, and another PICC line placement for IV infusion treatments. Plus, the poor guy has been under anesthesia more times than we can keep up with at this point.
We are still investigating the cause of his ongoing vomiting cycles, which are still a mystery. They occur almost weekly and typically are the cause of our frequent hospital stays.
Jack was recently diagnosed with PTLD (Post-Transplant Lymphoproliferative Disease), which is common post-transplant and easier to treat when caught in its early stages. Since his diagnosis is on the milder end of the spectrum, he is currently undergoing intensive treatments to help cure the PTLD. We report to the pediatric oncology clinic at Vanderbilt every week for 6 weeks to undergo 6-hour continuous infusion treatments. The medication that is being used is similar to a chemotherapy drug, which destroys all of the cancer-causing B-cells in his body. This is important to tackle early because late-stages of PTLD can evolve into a type of lymphoma cancer, and of course, we are trying to avoid any other potential cancers from growing in his body!
Jack is also experiencing some mild liver rejection, which can also be pretty common after a liver transplant and is being closely monitored. His liver enzyme levels are currently elevated and trending upwards (not good) so his doctors wanted him to come back into the hospital for monitoring, IV steroid treatments, and a possible biopsy procedure.
We are hoping his symptoms level out soon so that we can resume a sense of normalcy in the near future. COVID-19 protocols are still heavily in place in the hospitals, so only one parent is allowed to stay with Jack. We were so blessed for his doctors and nurses to advocate for Jeremy and I to both be permitted to stay during one of his recent, more prolonged hospital stays. They have been so supportive and understand how exhausting this year has been for the three of us.
Between hospital stays and being Jack's home health nurses as we manage over a dozen medications daily, maintain his g-tube feedings, administer IV medications, flush/heparin lock his PICC line, attend outpatient appointments/infusion treatments, and prioritize his overall development via weekly physical/occupational/speech therapies, we are somehow still standing. Also, I am still working full-time (thankfully) and Jeremy is still traveling back & forth to Charlotte for work on a weekly basis. We are literally always tired but trying our absolute best to keep pressing forward. Why? Because that is what Jack deserves. We will do anything for our Jack Jack. All of the stress and exhaustion will be worth it once we are on the other side of this journey.
