July 28, 2020
Rachel was having headaches the last couple of days on vacation. On our scheduled last night of vacation Rachel got a headache that would not go away. She is prone to headaches/migraine so we gave her Ibuprofen (which usually helps) and then Tylenol and neither seemed to help. She also has allergies so we gave her Benadryl and that didn’t help either. She was throwing up throughout the night. The headache remained as we drove home. After falling asleep in the car she woke up and said she was feeling better and was ready for lunch. We were all pleased she was feeling better!
Less than an hour later the headache returned. By the time we got home (7:00 pm) her headache was unbearable so we called the after hours pediatrician and they sent us to the after hours clinic. Her condition worsened. She threw up at the clinic and then her mental status began to decline as well. We took her to the hospital emergency room!
Because of the pandemic only one of us was allowed to go into the ER with Rachel so Mom went in and Dad had to wait in the waiting room. Rachel had a lot of tests: Covid19 (negative), EKG, blood tests, urine test, CAT scan, and a lumbar puncture. It was a very long and scary night and Rachel was in a lot of pain (across the front of her forehead). We were admitted to the pediatric unit at 6 a.m. the next morning.
Rachel had a fever and was on IV meds. Despite being given very strong medications, they barely touched the pain. The blood draws and fluid from her spine were sent off to labs around the country. They were trying to rule out Lyme’s Disease and Meningitis (Bacterial, Viral or tick borne was in question). The lack of answers for a diagnosis and poor pain management were significant challenges we faced throughout the hospitalization.
Because of the pandemic only one parent was allowed on the pediatric unit at a time. Mom took the night shift (sleeping on a pullout chair) and dad took the day shift. They met each morning at the entrance to the unit to share updates and exchange car keys. Patricia was able to stay with Lizzy at our home for the entire length of the ordeal. It was truly a blessing to have her there to help and support Lizzy and our entire family! Friends brought us plenty of delicious meals and offered much prayer and support:
By day 7 Rachel was starting to feel better but they still did not have a diagnosis and they decided to get an MRI. Although she was too sick to use any of it until the last couple of days, there were video games, movies, games and art supplies available on the unit:
Rachel spent a total of 9 days in the Shands Pediatric Hospital. She continues to follow up with a neurologist for Migraine management/treatment. Although there was never an absolute diagnosis, they settled on viral meningitis (although bacterial nor tick borne were completely ruled out) cause unknown.