The Faces of Sepsis
Averie Duke - survivor
by Lainie Duke (Averie's mother)
On the afternoon of February 21, 2011, I received a call from my three-year-old daughter Averie’s daycare provider to come get her. I picked her up, she seemed ok, just a normal fever. When we got home, I gave her some Motrin. Within minutes she was running around playing with her sister & acting totally normal.
The next morning, her four-year-old sister woke up at her normal time and Averie was still sleeping. I told her to not disturb Averie. Let her sleep because she wasn’t feeling well and needed some extra rest. She continued to sleep throughout the morning. I went in and checked on her many times, and noticed she was hot, so I opened a window and turned on her fan.
It was almost noon, and she had been asleep now for 16 hours. I called my friend who is a nurse and asked her what I should do. She told me to wake her up right away and make sure she’s acting normal.
I sat down on the bed next to her and noticed her heart was beating out of control. I could actually SEE her heartbeat through her shirt. I rubbed the sweaty hair off her head and said “Time to wake up baby.” She opened her eyes and just looked straight ahead with this blank look on her face. I said “Averie, are you ok?” Nothing. “Averie?” Nothing. “Sweetheart, can you hear me?” Still nothing. She was burning up, temp was 104 deg, so I ran to the bathroom to get her some Motrin. As I came back in the room I noticed her shaking. It looked like she was shivering, I thought she had cold sweats. Then I realized it was a seizure. After she stopped, I stood her up on the ground next to me and noticed her legs were wobbly. She could barely stand up. We were then on our way to the ER.
I have never been so panicked in my entire life. I have had sick and injured kids before, and I always remained calm. This was the first time in my life as a mother that I wasn’t calm. I was terrified. I watched her expressionless face in the rear view mirror the entire drive to the hospital. We got to Kennestone Hospital Pediatric ER at about 12:30pm. The girl at the front desk took her temp, which was now only 99 deg, and checked her heart rate, which was extremely high. I asked how long it would be, she told me they were waiting for a couple patients to be discharged, then some rooms will open up.
After three hours of waiting, Averie still hadn’t said a word or shown an ounce of emotion. I went up to the front desk and told them she is getting worse. I was told to have a seat. We were finally called into triage. We had been waiting over three hours to be triaged. The nurse took a strep and flu swab. I said, “She has had the flu and strep before, she never acted like this; it’s got to be something else. She doesn’t have any symptoms at all!” The nurse disregarded my comments and told me to go back into the waiting room and have a seat. So we waited another two hours. Again, I went up to the front desk and complained, this time a bit more frantic. We were finally called into a room at 6pm, nearly six hours after we got there.
The doctor came in and said she really thinks it’s the flu, and there has been a lot going around lately, or possibly something else viral. I started crying, begging her to not discharge her. I told her I was not leaving, and I would sit in the waiting room if I had to. I knew she didn’t have the flu, or a cold, or strep, or whatever they were going to say it was. I knew that if we went home, she was going to die. Call it Mother’s Instinct, but I just knew.
The tests of course came back negative for flu and strep. The doctor was then starting to get concerned as she noticed Averie’s condition deteriorating. By this point, she was literally in a catatonic state. She wouldn’t answer simple yes/no questions, or acknowledge anyone was even talking to her. I was talking to her, crying, begging her to please just say something. Nothing.
The doctor ordered some blood tests, urine analysis and IV fluids. She didn’t even flinch or cry when they inserted the IV or the catheter. We waited another two hours for those results to come back. Urine was fine, bloodwork was alarming. Her white blood cell count was extremely high; I believe it was 40,000. They immediately started her on IV antibiotics and ordered a bed for her at Scottish Rite Children’s Hospital, and an ambulance. Finally, they believed me. Why did it take nearly nine hours for them to take me seriously?
We got to Scottish Rite at around midnight. They sent her directly into a room, started her on more IV antibiotics, and a pediatric ICU doctor came in right away. She asked me a lot of questions, trying to find out what could have caused the sepsis. Nothing made sense. No UTI, no ruptured appendix, no infection, no bug bite, no animal scratch, no recent surgery or illness. She searched every inch of Averie’s little body looking for a bug bite or scratch, and didn’t find anything. At this point, Averie was still catatonic. Hadn’t said a word or so much as cried once. She told me they are going to need to do a CT scan on her brain.
As a last ditch effort, she started asking Averie questions again, simple yes/no questions, not one answer. Then the doctor pointed to me and said “Who is that?” and Averie cracked a semi-smile and said “Mommy.” I have never cried tears of joy before then. The doctor was ecstatic as well. It was such an awesome moment!
Though she quickly reminded me that we’ve got a long road ahead of us. She cancelled the CT scan, since Averie was finally communicating somewhat. She ordered an enormous amount of fluids and increased the antibiotics. Her capillary refill time was 7-8 seconds (normal is 2-3), so she was extremely dehydrated. That night was a long one. Averie slept all night and nurses were in and out checking her diapers to see if she had peed yet. After a few hours on the fluids, she finally did, but it took about a full day for her capillary refill to return to normal. The 24-hour blood culture came in with nothing. I was told that happens sometimes and hopefully the 36- or 48-hour blood culture would provide some answers.
Averie slowly improved, hour by hour. On the third day, they took her out of the bed to see if she could walk. Poor little girl was so weak, she fell down right away. It took a few days, but she did gain her strength back. On the fifth day, they took her completely off of all antibiotics & fluids and observed her. We were discharged on the sixth day. They notified me that all three of the blood cultures came back with nothing. How was that possible? The doctor told me that unfortunately, in about 40% of the cultures for sepsis come back negative. I had a LOT of questions, and still do. Was it a bug bite that we never found? Was it some illness she has had for a while and I just didn’t realize it? Was I that much of an unobservant mother? He assured me there is nothing I could have done to prevent this and that I did not miss anything, that sepsis comes on strong and quickly. You can be fine in the morning, dead in the evening.
He told me I did the right thing by taking her to the ER, and that a lot of parents would have waited it out and given it another day or so, thinking it’s the flu. Then, the most terrifying thing I have ever heard in my entire life: “If you would have waited until the next morning, I’m almost certain she would have died.” It was harsh, but it was true. I asked him what do I do now?
How am I ever supposed to know if she’s ok? If she has a simple cold, should I take her to the doctor? He told me the key is the child’s mental state/alertness. If she has the flu or something that is making her feel awful, she is still capable of answering questions and communicating, no matter how bad she feels. If she isn’t capable of staying awake after an entire night of sleeping, wont answer me, won’t talk or cry, immediately head to the ER. He also told me I should never let a kid sleep that long, and that should always be a cause for concern.
I have never been so happy and thankful in my entire life as I was that day, leaving the hospital WITH my daughter. I wanted to submit her story as a caution to other parents. My daughter was fine on Friday night, in septic shock on Saturday morning. She didn’t have surgery, wasn’t recently ill, wasn’t scratched or bitten by an animal- I had no reason to think something like this could happen. TRUST YOUR INSTINCTS, and don’t let a doctor/hospital dismiss your concerns or rush you out of there. I will continue to be an advocate for my children’s treatment when I feel that something isn’t right. I still don’t know what caused her sepsis, and I never will know. But I will thank God every day for saving my little girl.