On a slip of white paper, Caitlin Blubaugh has listed all the things she can’t wait to have back: early morning coffee dates, working out, Bible studies. And in all capital letters at the bottom she wrote, “EVERYTHING, good and bad,” adorned with a smiley face. 

During the last few months, Caitlin lost all of it. After battling a rare skin condition that left her wrapped head to toe in bandages and sedated for nearly two weeks in the hospital, Caitlin is ready to start reclaiming the parts of her life she lost. 

She’s started her photography business again, recently doing a real estate photo shoot, and she hopes to start mini photo sessions soon. 

Caitlin’s parents, Mark and Stacie Blubaugh, own Main Street Scoops and Sweets, plus the new Gathering Place on Main Street, where Caitlin is starting to work. 

The family shared about their journey the last few months and how the Eudora community stepped up to support them through a scary and unknown couple of months. 

Burn from the inside out

Mark and Stacie first started to grow concerned when Caitlin started developing blisters on her chin in early November. Stacie sent photos to some friends in the medical field, who immediately responded that it looked like Stevens-Johnson Syndrome. 

The syndrome is a rare, serious disorder of the skin and mucous membranes. Stacie described it as a chemical burn from the inside out. The family quickly began searching for a burn unit to treat the condition. 

Initially, they were denied a post at the KU Medical Center and started looking for other options. But after about an hour, they sent a photo of the blisters continuing to spread on Caitlin’s face and were admitted. 

Caitlin’s sister, Brooke, went with her in the ambulance to the hospital. But the trip was considered a transfer, not an emergency, so the ambulance kept its sirens off and traveled at a normal speed. Brooke urged them to move quicker.

The staff explained they could only use sirens if the situation was life-threatening, so Brooke asked for a check of Caitlin’s temperature, which revealed she had a fever at 106 degrees. The sirens were switched on, and the ambulance sped toward the KU burn unit. 

After getting Caitlin checked in at the hospital, a dermatologist pulled the parents aside to let them know there was a 30% chance Caitlin wouldn’t survive.

“That’s the feeling that no parent ever wants to ever feel,” Stacie said. 

Mark repeated a mantra his family has applied to many areas of life: “Pray like everything depends on God, but work like everything depends on you.” 

‘We never left Caitlin’

A couple of days later, Caitlin’s condition was critical as her skin continued to detach. The doctors decided she needed to be intubated to protect her lungs. Stacie and Mark received the call and rushed back to the hospital, but when they arrived, she was already sedated. 

The family stayed with her. They stayed at the Friendship Inn, a donor-supported housing facility near the hospital (“You need to give them a plug,” Stacie said. “They were great.”) Some of the kids would take shifts back in Eudora keeping the shop open.

“We never left Caitlin,” Stacie said. “Somebody was always with her.”

She remained sedated for 12 days to allow her body to focus on regeneration, while wrapped entirely in bandages. 

“I didn’t really get to talk to her again before she was put under,” Stacie said. “That was probably when I thought we were going to lose her.”

Those 12 days were some of the hardest for the family. While sedated, Caitlin developed multiple infections and received several blood transfusions.

But soon, doctors began to decrease her sedation. Caitlin reacted strongly, trying to climb out of the bed and requiring multiple nurses to keep her down.  

As Caitlin slowly began to regain consciousness, doctors performed tests to check her breathing, where Caitlin showed she could breathe on her own again and the breathing tube was removed.  

She started to regain consciousness, and the family began small interactions with her. But Caitlin started to suffer from hospital delirium. Mark recalled her worry about fire, which he thinks was the lights distorted by the membranes in her eyes.  

Her family sat with her and talked her through it, and Caitlin began to recognize her family’s voices and where she was. 

“Caitlin’s always been a stubborn one,” Brett, her brother, said. “Off the bat, I wasn’t really that worried about it, knowing Caitlin, like I said, she’s always been one that doesn’t back down from a challenge. She’s gonna recover no matter what.”

As she regained awareness, doctors started by asking her simple questions: What year is it? Caitlin guessed 2026 and 2027, before doctors reassured her it was still 2025. 

What that meant was Caitlin hadn’t yet missed Thanksgiving, her favorite holiday. She became determined to make it home by then. 

Sleepover at Caitlin’s apartment

Late in November, doctors began to notice new skin growth replacing the old, damaged skin. As she healed, Caitlin began physical therapy and started walking around with a walker. She was determined to avoid inpatient rehab.

“She just kept the sweetest spirit through the pain, and was making sure others didn’t feel bad as they were not meaning to hurt her,” Stacie said. “But she was just hurting everywhere.”

A few days before Thanksgiving, Mark sent a text to the family group chat around 6:30 a.m. 

If Caitlin ate all her breakfast, there would be a sleepover at Caitlin’s apartment that night. 

Stacie was shocked, excited that Caitlin may get to be home by Thanksgiving, but also worried that it may be too soon.  

After getting to the hospital, doctors reassured them Caitlin had continued to improve rapidly and, in part due to her supportive family, would be able to go home that day if she continued to improve. 

First, Caitlin had to pass a swallow test. The first time, she failed and the team wanted to do an imaging study. But Stacie and Mark advocated to repeat the swallow test instead, believing Caitlin could do it. On the repeat test, Caitlin passed. She would be home for Thanksgiving. 

While Thanksgiving didn’t look the same — they ate a frozen spaghetti casserole someone had made and left for them — it was exactly what Caitlin wanted. She was not in the hospital for Thanksgiving, and the family was together at home.

Outpouring of love

The Blubaugh family thanked the community for the support they’ve been shown through the process. In November, the Chamber sponsored a “Scoops for Support” event that brought in community members who provided nearly $2,000 in tips to support Caitlin. Friends from church started a GoFundMe to help cover medical bills that raised over $68,000.

Families provided food that the Blubaughs are still working through. 

“The outpouring of love and help and donations and things like that, it’s been very impressive, the support,” Mark said. 

In the months since her discharge, Caitlin has continued to recover slowly. She moved in with her parents, who have continued to care for her. 

As her skin continued healing, the focus switched to Caitlin’s eyes. The syndrome carries the risk of eye damage. To protect her vision, doctors utilized amniotic eye membranes: thin bandages held in place by rings like contact lenses.

Throughout December and January, Caitlin endured multiple procedures to replace these membranes as inflammation persisted.

The Blubaughs said they don’t need anything more from the community. They emphasized that everyone has their own challenges they are going through. This one has been theirs. 

“I don’t want to put out a cry for help now, because everyone’s done amazing,” Mark said.

Earlier this month, doctors removed the last membrane still in her eye. Her vision tested at 20/20 in her left eye and 20/25 in her right eye. 

She’s focused on regaining independence: She wants to drive again and get back to spending more time with her friends. 

In addition to her photography, she’s been helping with the family’s new Gathering Place event space, serving as the main contact for bookings and communication.

She still has issues with light sensitivity that will take time to recover, and there will likely be lingering impacts on her life. But for now, the Blubaughs are just excited to have Caitlin back. 

“It probably is partly due to just who Caitlin is, I never felt fear for her life,” Brooke, her sister, said. “But I guess the hardest times were seeing her in pain and not being able to do anything. We were all very surprised how early she was able to come home. We all just point that back to our faith and the prayers and community that came together.”

Reach reporter Cuyler Dunn at [email protected]