by Danielle Nix

It has been a crazy past 5 months. It feels as if we have been sucked into a vortex, and we are just starting to find our footing again. It was 5 months ago at a follow up Echo for Zack’s heart valve that we learned he had large “masses” in his abdomen. Masses that were preventing his liver from functioning properly and the only fix was a full liver transplant.

It’s hard to process all the feelings that come with such an announcement. Fear for your child. Hope for a successful transplant. Wonder at how this could happen to YOUR child. He had already been through so much! Open heart surgery at 4 months old, Failure to Thrive at 6 months, Dyslexia in elementary school, a heart valve in 5th grade, and now this. 

The successful transplant occurred on Aug 10th and we are extremely grateful that we did not have to wait long, and the liver Zack received was perfect for him. The transplant surgeons at Children’s are skilled, kind, and simply amazing. I cannot express enough how grateful I am for Zack’s liver team. They have provided so much support along the way.

This month Zack started to get back to High School. He loves his High School, and it was hard for him to miss the beginning month of school. He has been going for a shortened schedule of 9:30-1:00, and it has been great for him to focus on something other than his liver. He was nervous to go back at first, with all the questions that high school friends have, but Zack has found them all supportive and caring.

The best part of Zack receiving this new liver is that he is no longer itching! The only symptom that Zack had prior to transplant was extreme itching. He would itch his feet on his bedroom carpet until his feet bled, and there was a hole in our carpet. The poor kid could not get relief from the itching. After numerous doctor visits, from allergy to dermatology to neurology– no one had answers. When we finally met the liver team they told us, “All our kiddos itch!” We were cautiously optimistic the transplant would help.

It did. The new liver has drastically cured the itching. Zack is in a better mood, he doesn’t use tubes of cortisone anymore, and his hands and feet are starting to recover. He used to wake up in the middle of the night to itch and now he sleeps through the night. He never wanted to go skiing because the jackets and wool clothes would make him itch. He is now entertaining the idea of getting on the mountain again. 

We have a liver appointment tomorrow and we are hoping for good news. Each time we go to Children’s we are a little apprehensive, but hopeful. We have been home for 10 days straight now and each day Zack gets a little bit better. It is a blessing to see my kid’s personality return, to hear the humor in his voice, and know he has a chance to grow up and change this world.

Thank you all for coming along on our journey. 

Thank you to all families who have made the decision to save another’s life through organ transplant! We never thought we would be on this journey and am thankful for those who donate to help others in dire need.

See Children’s Hospital Pediatric Transplant Program for information about organ transplant.

See Children’s Organ Transplant Association about COTA whose mission it is to assist and support families facing the financial burden of organ transplant costs.