On Tuesday night Clarissa was up all night with a high fever of 102 degrees. As I held her and nursed her, she started having short seizures. They were super short–less than one second–but she would startle, her eyes would widen with terror, and she would scream in pain for a long time after each one.
But the seizures were so short I kept thinking “Wait, did that just happen?” I thought maybe her fever was so high that she was having a painful muscle spasm or something, so I put a cool, damp cloth on her head and brought her into bed so I could watch her for the rest of the night. The seizures started again and happened every five minutes between 5:50 and 6:10am, and when I re-wet the cloth and held it on her head, they stopped. Finally, in the morning when she was hyperventilating and limp on my shoulder, I decided to bring Clarissa into the pediatrician.
He sent us to the hospital because he feared she might have meningitis.
The neurologist at the hospital had me describe the seizures for him, and then he speculated that Clarissa had febrile myoclonus, which are basically short seizures that occur while a baby’s temperature is rising. This condition is extremely rare but usually the seizures are benign and there is nothing to do about them except bring the fever down.
The nasal swab showed that she also had three viruses: the adnovirus, the human metapneumovirus, and the rhinovirus.
At this point, I should have just said, “Great! We know what’s wrong with Clarissa. She doesn’t have meningitis, so I am going to bring her home so she can sleep and get better.”
Instead, I let the hospital play its please-don’t-sue-us games with Clarissa and me. The doctors wanted to protect themselves against lawsuits in case their diagnosis were wrong, so they ordered all sorts of tests, and, unbeknownst to me, were planning on keeping us there overnight. It would have been really nice for them to communicate this to me while I was on the phone with Abe trying to figure out if he should fly home or not. Every time I inquired if we could leave they told me that they wanted us to stay just a little longer for this and that.
One of the things they did was an EEG. This was torture for Clarissa. The EEG tech was delightful, but the actual procedure was so awful. Clarissa sobbed and cried the whole time. She kept looking at me as if to say, “Why aren’t you protecting me?” I felt so bad.
After this I put my foot down about the UTI test. The reasons they gave for testing her were stupid, and so I said no and told them that I was leaving. Then a nice doctor came in and convinced me to let them give her the test, so I wavered–and gave in. I was so mad at myself during the actual test, which was horrible.
After that I literally packed everything up, including Clarissa, and informed the nurses that we were checking out.
At this point, an angry, hostile, and aggressive doctor–that had not bothered to check on Clarissa except for when she first met her–came storming into the room and informed me that Clarissa could die if I took her home. She repeated this several times as I walked her through my own reasoning:
- We came here because we were scared she has meningitis
- Every single doctor has said she does not look like she has meningitis
- The neurologist gave a spot on diagnosis for the seizures
- The viral swab came back positive for three viruses
- Clarissa isn’t sleeping in the hospital and needs to sleep to get better.
- I have other sick kids at home, including one who started running a 103 degree fever the minute we took off for Clarissa’s appointment with the pediatrician. They will probably be getting up at night, my husband is out of town, and I need to be available for them.
- I haven’t slept for two nights, and neither Clarissa or I will get any sleep in the hospital.
- We are going home.
I then thanked her for her concern for Clarissa, to which comment the doctor did not respond. I honestly wasn’t trying to be sarcastic, but in retrospect, I was probably more upset than grateful.
Then Suzanne, who had come down to rescue us and help babysit the kids while I was in the hospital with Clarissa, came and picked us up from the hospital.
After she took us home, I tried to get Clarissa to sleep–to no avail. She was so traumatized from the hospital that she screamed all night long. I took her into bed with me and let her scream in my arms for hours and hours until she finally fell asleep.
I felt so, so bad and guilty for letting them do so much unnecessary stuff to her. I felt like I had lost her trust. It was a horrible day.