Liv’s Story from ER to Recovery

For most households with children, the month of May is full of excitement, reflection, and anxiousness for what’s next, and for our family, 2022 had a few special milestones. Not only was Olivia graduating from Kindergarten, but our oldest daughter was also graduating from high school and then headed off to college.

Olivia celebrated in typical diva fashion; she went to dance class, and we had cake at home. Olivia made a point to have her older sister smash her face in the cake, as we all laughed and smiled not realizing the magnitude of this precious moment.

A few hours later the house was a little too quiet, so I went to check on Liv, and she was asleep in her bed, which was unusual as it wasn’t even 8 p.m. I assumed her busy, emotional day wore her out, so I let her sleep as we had another big day of her sister’s high school graduation that next morning. A few hours later Olivia got my attention with a faint little scream. When I went to her room, she said she had a headache. She had no fever and no other symptoms but asked for Tylenol.

That next morning, we woke up early and as Olivia struggled to get ready and stay awake, my husband and I assumed she had a rough night and was just tired. When we asked her if she was hurting, she would reply, “No,” and instead just kept telling us she was just sleepy. Throughout the day she got extremely restless and begged to go home because she was so tired. At this point my husband and I assumed she was getting sick and that we would take her home and let her rest. Throughout the next two days she wouldn’t eat or drink much, and she struggled to stay awake as all she wanted to do was sleep. Assuming Olivia had a virus or COVID, we decided to let her rest as much as possible throughout the weekend since she didn’t complain once of anything hurting, nor did she have a fever the entire time. That Monday I reached out to Olivia’s pediatrician who stated that we needed to take her to the emergency room.

We initially spent 27 hours at our local ER, where we did numerous tests and X-rays, all with no answers. Ultimately another doctor came in and did a CT scan, and that was when we first got the news that it appeared Olivia had an infection in her skull. We were finally transported to Children’s Hospital Colorado. At this point it was late at night, but that didn’t stop the team at Children’s Colorado. They immediately went to work, doing more blood tests and lumbar punctures, got us to her room and scheduled surgery for the following morning to place a tube inside her ear.

It wasn’t until after her first surgery that we learned just how gravely ill our sweet girl was. An MRI revealed that she wasn’t just battling an infection behind her ear, as initially believed—the infection had spread throughout her skull and into her brain. The infection had rotted a portion of her skull, and she developed a cerebral venous sinus thrombosis (CVST), which is a blood clot in her major vein that was ultimately restricting blood flow from going to her brain. But that wasn’t it. She also had an inoperable epidural abscess in her brain. We had a large team of doctors from different specialties that assured me they would do everything they could to help Olivia. With all this information, I was numb, scared, and couldn’t grasp how truly sick my little girl was. I didn’t understand how much I’d appreciate this later in life, as in the moment, as a mother all you want is for doctors to fix your baby right now. Instead, the doctors explained to me that they were all going to meet and create the best plan.

That following morning, we sat in a hospital waiting room for six agonizing hours, holding our breath as our daughter underwent her second surgery in just 24 hours—this one to save her life. During our eight-day stay in the Pediatric Intensive Care Unit (PICU), we received the best care. We had multiple specialists on Olivia’s case because she was so sick. The cause of the infection was unknown, so it was decided to put her on a harsh course of antibiotics, which ultimately led to another surgery. This would be three surgeries in three days. Five days into our stay we found out that the infection went into Olivia’s bloodstream; she was completely septic. Due to the quick thinking of her infectious disease team, the harsh course of antibiotics ultimately saved her life.

The wonderful team we had didn’t stop working on Olivia’s case simply because surgery was over and her labs were improving. Because the infection was so serious, Olivia needed months of treatment, including IV antibiotics, blood thinners and weekly lab work. Although Olivia couldn’t spend her summer having fun being a regular kid, the doctors created a plan to allow her to get her treatment in the comfort of her own home. Due to COVID protocols, there were no visitors allowed, so Olivia spent her hospitalization away from her sisters, her friends and the rest of her family. Before we headed home, Children’s Colorado provided me and my husband with training on her IV treatments and blood thinner injections and got us set up with a local nurse to do weekly IV care cleaning and lab draws. The day we left the hospital we had no idea what the future held for Olivia. We left with such blessed emotion that we got to walk out with our daughter by our side.

Three years later, Olivia has faced — and overcome — so many challenges resulting from her brain injury, but she’s never let it dull her sparkle. She deals with short-term memory loss, processing difficulties, persistent headaches, tinnitus and severe anxiety.  

For the rest of her life, Liv will carry the risk of her blood clot returning — even from something as simple as a bump to the head — or developing a stroke or seizure. But with the continued support of her incredible care team at Children’s Colorado, we’re able to make sure she’s thriving and living as close to a normal childhood as possible.

There have been many tears, moments of frustration and anger, but also plenty of goofy, joy-filled times filled with laughter. Through it all, Olivia works hard every single day and never gives up. Her resilience continues to inspire us all.