I don’t know about you guys, but I used to love rollercoasters. Like, LOVE them. Then, when my husband and I decided to go to an amusement park about 3 years ago for my birthday, I realized, I didn’t love them as much. What once made me scream in excitment, made me nauseated and dizzy. It was fun to say we had gone but I was good to not do it again!
This liver transplant journey is a proverbial rollercoaster. The emotional low of getting to the point of your child needing a liver transplant to the emotional high on the day you receive the call that a liver is available. And the ups and downs and twists and turns continue.
Abby is overall doing extremely well!! The liver team has been so impressed by her liver numbers and how well she has done thus far after surgery. We are currently going to weekly liver team appointments at CHOP and right now, Abby is getting blood work down twice a week. One of the main reasons we needed a liver transplant for Abigail was because her bone marrow was starting to fail. And already, 3 weeks post transplant, her bone marrow is functioning like NORMAL!! It is truly amazing to look at her numbers now compared to 2 months ago. We are also able to begin increasing Abby’s intake of total protein. Abby was never able to breakdown protein, hence her MMA. However, with her new liver, she now has the ability to breakdown protein and already we are seeing a cognitive and muscle memory difference in her ability to walk and communicate. She isn’t walking independently yet, but the day is definitely coming!
However, like every rollercoaster, there are also twists and turns. We knew that Abby had the beginning of chronic kidney disease going into her liver transplant and we knew that some of the meds would possibly affect her kidneys. And, unfortunately, they are. Now that her liver and bone marrow are happy, we need to make her kidneys happy! There is the potential to need to change her anti-rejection meds, but for now, we are adjusting her current meds and monitoring her kidney function weekly. We are hoping and praying her kidneys become less irritated as time goes on.
And lastly, this liver transplant gives us the ability to travel. To travel to China to meet her birth family. Abby was granted a wish with the Make A Wish foundation and in the next few weeks we will be meeting with our Wish volunteers to talk about Abby’s wish. There are no clinics that specialize in MMA where Abby’s birth family is from and because of that, her birth family made the selfless decision to place her for adoption here in the states knowing that by doing that she would have the best chance at life. We are honored to be her mom and dad and love the fact that we have an open adoption with her birth family. Because of this liver transplant, the risk of a metabolic crisis is much,much less and her ability to travel outside of the country is a very real possiblity now which gives us the opportunity to take her back to meet all of her extended family in China!
Photograph by: Meg Brock Photography
Some days this rollercoaster leaves us elated. Other times, it leaves us nauseated. But in every high and low, twist and turn, we know that God is the One in control and we praise Him for the continued miracles He is working in our MMA fighter!