We are officially one month post transplant today. It still feels surreal most days – that Kennedy has a new liver and we are no longer waiting.
As I type this we are actually back at the U with Kennedy. We were admitted last Thursday due to some abnormal blood work on Monday and Wednesday. Her liver enzymes (specifically her AST and ALT, for anyone that is curious) were elevated and had increased from Monday to Wednesday. Blood work is often the first sign of rejection, so we were admitted Thursday afternoon for tests and treatment. There were no other signs that anything was wrong, however, that is common with rejection.
Kennedy had a liver ultrasound on Thursday night, and that came back looking normal. She had a liver biopsy Friday morning, and it showed mild rejection. This is what the team anticipated and so we already knew the plan if this was the case – higher dose IV steroids to bring her liver enzymes down and then transition back to oral steroids when appropriate. Her team initially planned on three days of IV steroids. Sunday was day 3 of the steroids, however, her blood work this morning (Monday) did not show a decrease in both liver enzymes. So, Kennedy will be given 1-2 more days of IV steroids. Our goal is for this to reduce both liver enzymes, and then transition back to the oral steroids. If this doesn’t work then her team will come up with a new plan – most likely another liver biopsy to see what/if anything has changed and see if it can tell us anything else.
Other than that, it was nice to be home for a few weeks (in between being discharged for her transplant and being readmitted last Thursday). K is still on lots of meds and restrictions but she has a lot more room to play at home and we were able to spend more time outside. We had fun exploring some new dog parks too- Marley loves exploring new areas and Kennedy loves seeing all the “woof woofs.” Marley is REALLY enjoying the fact that her sister can eat normally – she is finally understanding the benefit of having a little human running around the house 🙂 Side note: Marley’s vet said she should lose a few pounds….I don’t see that happening with Kennedy eating normally now, lol.
While it’s hard to be back in the hospital, again, we are so thankful for her amazing team at the U. They are cautious, proactive, and experienced in these matters. The doctors check in with us daily to keep us updated and answer any questions we might have. Rejection is common with transplants, especially in the first year, so we knew this was a possibility. They will continue to tweak her meds until we find the sweet spot for her body. So, while we hope to not have this happen again, it is a possibility. But, one day at a time. Kennedy continues to inspire so many of us – she is still so happy, silly, and loving regardless of everything she goes through.
We would like to remind everyone of the COTA for Kennedy 5K on September 18th. Simply go to the “Events” page at the top to find more information and to sign up/donate. People are welcome to participate in person or virtually. We are SO close to our goal for COTA for Kennedy. Thank you to everyone that is caring for our family in one way or another – donating, spreading awareness, praying, sending positive thoughts, and so much more. We are so thankful for each and every one of you.
We will try to provide another update soon, when possible!