We are taking the COVID-19 pandemic very seriously in our house. This is because, even under the best of circumstances, our youngest daughter, Marie, is medically fragile due to a rare chromosomal disorder called Ring14 Syndrome. She has several underlying medical conditions, including intractable epilepsy, intellectual disabilities, and a compromised pulmonary system, that put her at high risk for a severe illness from COVID-19. As such, Marie has been almost completely isolated since March 7th. Even our older daughters, who are in college and never turn down an opportunity to see Marie, chose not to come home this spring for fear of introducing the coronavirus (SARS-CoV-2) to our household. Despite all the precautions, Marie was admitted to the COVID ward of our local hospital on Thursday, March 26, due to COVID-like symptoms for a very stressful 24 hours. Below is the story of how we got there and what we learned from this experience.
Marie’s week was a slow decline that did not initially indicate a concern about the coronavirus. Here is how it unfolded: It started with a cluster of seizures that stretched from late Monday evening to Wednesday afternoon. During this 36-hour window, Marie had 8 tonic/clonic seizures that left her, and us, wiped out. On Wednesday night, although the seizures had relented, Marie started coughing. By Thursday morning she had tremors, an elevated heartrate, and low oxygen saturation. At 10am that morning, we called her pediatrician to weigh the need for an office visit against the risk of exposing Marie to another pathogen. By noon, she was running a fever and had coughed up some bloody sputum. At this point an office visit was necessary. However, COVID-19 was still only a remote concern. We were much more concerned that she had aspirated during her seizures, a fear that was supported by the 4-month-old memory of such an occurrence that left Marie intubated with sepsis in the PICU for a week. This memory was probably on our pediatrician’s mind as well. After examining Marie and once again weighing the risks, our doctor called the ER to advise them that she was sending us there for tests, x-rays, and IV fluids.
Luckily, we live in an area that still only has a few confirmed cases of COVID-19. However, while neither are over-burdened at the moment, the ER and hospital have changed drastically in the last month. At the door of the hospital my husband, Andrew, and I had to decide which of us would accompany Marie, because only one visitor is allowed with pediatric patients. We opted that I would stay with Marie, leaving Andrew with the difficult job of waiting and worrying in the car. Upon entering the hospital, Marie and I were both screened for risk of COVID-19, our temperatures were taken, and then we were triaged to a private room in the ER. Marie’s chest x-ray showed pneumonia of both lower lobes, but all the rapid tests for pathogens, which include Strep, flu, RSV, came back negative.
At this point Marie became a potential COVID-19 patient and a test was administered. The ER staff gave Marie an IV antibiotic to treat her pneumonia as well as IV fluids. Then she was admitted to the COVID-19 ward for observation, out of concern for her ability to decline so rapidly. Hospital placement dictated this placement.
By Friday afternoon, we had an understanding of what was making Marie so sick. She had two bacterial infections one associated with pneumonia and the other with a urinary tract infection. Since Marie was feeling better and now had a bacterial pneumonia diagnosis, we were eager to go home where we have most of the tools necessary to monitor her recovery. Consequently, the hospital released us on Friday evening, pending an anticipated negative COVID-19 test result, which arrived on Sunday afternoon.