On the long and hard road to recovery, Caitlynn had more labs, ultrasound, doctor visits today. There were lots of waiting, lots of laughs, and hanging some of special people. It was a long day, but life is good. Caitlynn and family are beyond thankful to be where we are at this point.
(August 5th)
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On August 26, Cait had more labs and doctor visits. She is doing awesome! Labs are all trending in the right direction and some meds are being reduced. This still feels unreal, like something from an after-school special. We are all amazed to see her becoming a kid again. It’s still one day at a time down our long and hard road.
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The road led us on September 4, to finds answers to Cait’s lab numbers being a little high. The doctors requested an MRI with Contrast. Dad was not feeling his best, so Mom, Tara, battled this one without Dad today. Dad was sad not being with them.
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Cait had labs again, at Levine Children’s Hospital on September 9th, to check on some numbers that at not where they should be. The doctors upped her prednisone heavily over the weekend and hoping they do the trick.
Tara handled the up and down adventure, solo today with Cait and her younger sister, the Bean. I am thankful for her and the flexibility has as she manages these appointments. Driving from home to downtown Charlotte in the morning is about as fun as getting a root canal when the nerve is not fully numb. I love my girls.
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On September 17, Today, marks six years ago that Caitlynn was diagnosed with Autoimmune Hepatitis. It has been a roller coaster of emotions that I cannot explain. We have had ups, downs, and many in between moments, but we are beyond thankful to be where we are with her today.
Cait had labs again this morning. They scheduled the previous MRI since her numbers were so off. MRI results were all positive so a Liver a biopsy was scheduled. Fortunately, a heavy dose of steroids drove down her numbers and they canceled the Biopsy. Tara knocked out this morning while I cheer them on from the office.
A follow-up was needed the next day for a bit more testing after labs yesterday. Always a long day even though the procedure will take less than 30 mins.
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On October 11, Cait had a scare a few weeks back when Covid ran it course in the house. She almost had 0 symptoms and tested negative for Covid several times. Her numbers were off the chart, however, after an MRI and Liver Biopsy that all showed great results, the only thing left was Covid as the culprit.
Cait had another Ultrasound sound today just to have a peek at all the connections and blood flow, fortunately it was quick, usually takes 4 hours or more. Tara is blessed with more flexibility in her schedule than I have. I hate missing these appointments. Fortunately, the gravity and stress of them is far less than the uncertainty we had pre transplant. We take things one day at a time, so thankful for all the blessings we have.
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Today, November 11, Caitlynn had clinic and lab appointments. A few weeks back, she cracked her ankle bone and got to experience life in a boot. Unfortunately, today’s visit included a bone density test. It feels like there’s always something new to face.
Overall, Caitlynn is doing incredibly well. She has the strength and spirit of a lion, though sometimes she pushes herself harder than she should. Since her transplant, she’s been filled with so much more energy. It’s a blessing to see her running around, laughing, and truly enjoying life again.
We’re endlessly grateful to the wonderful people who have supported us on this journey. And a heartfelt thank you to Rodgers Park Baptist Church, Pastor Joel Ervin, and Jeannie Ervin for the constant support and joy you bring to Caitlynn’s life.
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Cait had a Biopsy today (November 21) to check out her liver. She was struggling with numbers so they wanted a precautionary peek, hopefully this will go quick. One day at a time. Finally, getting out of here, with expectations of a return trip next week with a referral to the bone Dr and further test. Also, a CT scan to look at bile ducts since the biopsy seems to be clean.
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Cait was back again on September 26, for her CT scan, obligatory “gift shop” stop and a few “Hello, hey did we not just see you’s ?” She was in good spirits this morning but ravenous. She is already hitting us up to go to “Lush”; can you even eat bath bombs?
Labs show her Anti-Rejection meds are at the right levels; Biopsy last week seems to be clear with no rejection, so they are taking a closer look at Bile Ducts.
Happy Six Months “Liverversary”
December 7, 2024, six months ago today, we got the call that changed everything, they found a liver. I can still feel the weight of that moment, standing together as a family, huddled in the room for a hug. It was past midnight when Pastor Joel Ervin called to pray with us, offering a sense of peace amidst the storm.
The days that followed felt like time stood still. Those two weeks were a blur of hope, fear, and awe at the sheer magnitude of the miracle unfolding before us. The best pediatric liver surgeons, anesthesiologists, and ICU nurses in the country, all brought together at Levine Children’s, became part of Caitlynn’s journey. We were beyond blessed to have access to this extraordinary team, a privilege not everyone is afforded.
And then there’s Caitlynn, our warrior. Her tenacity and unshakable positivity carried her through, allowing her to leave the hospital in just one week. A single week! She continues to amaze us every day, growing stronger and proving what a fighter she truly is.
The road ahead is not without its challenges, but today, we celebrate a milestone we weren’t sure we’d ever reach. Happy 6 Month Liverversary, Catie Bug. You’re our miracle, and we love you more than words can ever express.