The first hospital stay of 2025

If you follow us on any social media platform, I’m sure you’re already aware of Freya’s first hospital admit of the year. I hate to say that we knew there would be one coming soon, but we knew. Six months was a really good run! But even the stays that don’t feel so scary can turn out to be incredibly traumatic and stressful for these little ones. I really hate this part of the disease.

Freya had labs and a transplant team appointment scheduled for January 16th, and we were able to secure a room at one of the Ronald McDonald Houses down in Orlando. So we were rushing to get packed for the stay, stock groceries for everyone staying home, and all the other things that an overnight trip requires. When I came home from running errands, baby was frantic and I noticed her cheeks were red and hot. That night she spiked a fever and threw up her last feed of the day. I had a feeling we were probably just dealing with something viral, so I wasn’t too concerned. But one of the complicated parts of being listed for transplant is that I need to let our transplant coordinator know when Freya is sick, so that the team can put a hold on her status. With that always comes the chance that they will tell us to take her into the ER to get checked out and, if there is a fever, most likely admitted for treatment and observation for suspected cholangitis since each bout can be so damaging to the liver.

So the next morning, we cancelled our appointments down in Orlando and our RM House reservation, and we packed extra clothes and things anticipating a hospital admit. Rather than driving to Advent in Orlando, we drove to Wolfson in Jacksonville just in case they decided not to admit her after checking her out. After running labs and a full abdominal ultrasound, we waited around in the ER for 8 hours before the transplant team communicated that they wanted to transfer her care down there. During that time, Freya quietly ripped her IV out of her arm and had to have a new one placed, and I started developing the same symptoms she was experiencing. Then it was another 3 hours of waiting for transport to arrive, getting her car seat strapped to the gurney, and then waiting for a CD to be burned of her imaging (in hopes that she wouldn’t have to repeat the ultrasound) before we were all on our way. Dad drove alone in the car, and Freya and I rode in the ambulance. I had started feeling nauseous while we were in the ER at Wolfson, and I ended up getting very sick on the ride down to Orlando. What fun. I was so discombobulated by the time we arrived that I also left my phone inside the ambulance and didn’t realize until the next morning.
By the time we finally made it to her room
and got situated it was 1:30am. Now the whole process of sticking her for all the exact same labs that were drawn at the last hospital and swabbing her nose and just generally torturing a baby started all over again. Her nasal swab came back positive for paraflu 1 (no surprise there), so that meant we being quarantined during this stay. There’s also no co sleeping at the hospital, so we had to get her to sleep in the crib where she gets poked and prodded which is generally impossible. Dad usually stays up with her for most of the first night. I wanted to let Dad sleep, so I took her around 3am. I was still so nauseous and sick myself, but I walked with her until she finally fell asleep around 5:15, when, to my surprise, I was able to lay her down in the crib. She was exhausted. 5:35 rolled around and a team of phlebotomists arrived and turned on all the lights to take more blood for labs. Ah, the joys of hospital life. 😩

At 7am, the night nurse informed me that the team had ordered a new ultrasound, and this time she would need to be NPO for 3 hours (nothing by mouth). Fantastic. Jarrod had to leave and head back up to Jax (for some appointments of his own and to retrieve my phone) just as the ultrasound team arrived. Freya was like an angry animal. She kicked and rolled and was so red and sweaty all the tape holding her tubes and IVs were starting to come off. She would not be calmed during the entire ultrasound. She was also glaring and giving everyone side eye constantly. 17 months is a whole new ballgame at the hospital- who was this child?

Freya’s imaging didn’t show any sign of potential infection which is what her team was looking for (cholangitis). There was no fluid in her belly (ascites) and although the cysts inside her liver had grown a bit, there was no sign of infection in either of them. She does have a new cyst on or near her kidney. Her transplant hepatologist believes that this is just due to the type of biliary atresia she has. She did have a few more mishaps with her IV- one inflitrated and her veins were all so blown we were all praying that the third would last. Every lab draw was an ordeal and required multiple sticks.

Long story short, her fever resolved and it was determined that her symptoms were all related to the virus. She started smiling and charming everyone again by the last day and half she was in the hospital, and by the time she was discharged, her labs had returned to normal and all was well.

Since then, we have seen her pediatrician, her hematologist/oncologist, the ER to place a new NG tube, the transplant team, and had more labs drawn. She is so wonderfully stable right now. We are so grateful that she has this time to grow and enjoy being a toddler who can dig in the dirt, chase chickens, kiss her dogs and cat, go to parties and do normal toddler things before post transplant life puts restrictions on her. We know there are pros and cons to both sides of the coin, so we are doing our best to enjoy the perks of a stable pre transplant life while we can.

Ultrasound #1