This year, Caitlynn was chosen as the Pediatric Liver Champion for the American Liver Foundation Walk in Charlotte, NC.
Many of you know the journey we’ve walked: the hospital stays, the fear, the prayers, and ultimately, the gift of life through a liver transplant. What you may not see is the strength Caitlynn carries every single day, or the hope she gives to others by simply being here (THIS!). She used her story to raise awareness for liver disease and to support the families still fighting.
The American Liver Foundation conducts research, supports families, and saves lives.
Guess who got her NG tube out today! This girl is doing amazing and really getting back on track after out last extended stay at Hotel Levine.
(May 20th) Cait is on a quick “getaway” to Hotel Levine for a few days. Overall, Cait’s doing well, but her bilirubin levels have been rising. An MRI on Monday showed some dilation in her bile ducts. She’s scheduled for a procedure tomorrow to place a stent to help improve the flow. It’s a fairly common procedure, and if all goes smoothly, we’re hoping to be home by Thursday. On a lighter note, we got a fancy remodeled room. However, while it’s cool to watch helicopters come and go, they sure are noisy. Thanks for all the continued love and support, we feel it every step of the way
Cait Is at Livine…Again
On May 20th, Cait was admitted to Levine on Tuesday night with plans for an endoscopy on Wednesday morning to place a stent in her bile duct. Unfortunately, the duct was so blocked with “stricture” that they couldn’t get the stent in. This blockage explained a lot about her elevated liver numbers and high bilirubin.
On Thursday morning, they expedited another procedure where they accessed the main bile duct through the top of her liver. This approach also wasn’t fully successful in placing the stent, but they did manage to insert a small drain tube (think “French drain”) to help. The tube can drain from both ends and exits through her side. While this isn’t a permanent solution, the good news is that it’s working, the drainage is reducing her liver and bilirubin levels to numbers we haven’t seen since before February.
Essentially, her main bile duct had dilated so much it was barely allowing bile to drain from her liver, leading to those high numbers. Long term, it’s likely they’ll need to rebuild the bile duct. These procedures have been painful for her, and as if that wasn’t enough, she’s also developed pancreatitis.
We had hoped to be home by Thursday, but due to these complications, we’re now hoping to be discharged tomorrow returning sometime next week.
We’re hopeful that we can still attend the Savannah Bananas game on June 6th and the Liver Walk with the American Liver Foundation on June 7th. Because of this, she’ll likely keep the drain tube in place until those events are over.
Last night was tough, Caitlynn didn’t respond well to Ativan, struggling from 10pm to 3am, stuff really messed her up 10 out of 10 not recommended treatment for that girly. Thankfully, today has been brighter. Her color is returning, her pain is more manageable, and she even has the energy to leave her room again. She’s not walking yet, but she’s wanting to get up. She’s finally eating (the first time since Tuesday), and we’re hopeful she’ll start bouncing back quickly.
For now, things are moving in the right direction. It’s been a lot for Caitlynn, but we’re so encouraged by the progress we’re seeing. One day at a time.
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Awesome event yesterday! Huge thank you to everyone OneCloud for showing up and supporting this cause.
Walkers gather at McAlpine Creek Park in Charlotte, NC, to raise money, awareness for those affected by liver disease
