The Spot on the Carpet

It was still there. It was all still just how we had left it two weeks earlier. Red solo cups, a bottle of vodka, some plates and napkins, and, of course, the spot on the carpet. The relief I felt getting out of the hospital and finally being, as I call it, “home sweet home,” quickly melted away as I was brought back to that night filled with shear terror, and chaos, and panic. Having been locked away in the hospital for the past two weeks, it was hard for me to remember that we had been in the middle of a family get together when everything suddenly came crashing down. As my mind tried to sort out the flurry of emotions that suddenly hit me, my eyes were focused on one thing. The spot. There was a spot on the carpet near the fire place where I had laid Avery’s body as she was in the middle of a prolonged, and come to find out, life-threatening seizure. We hadn’t yet had time to scrub away the stain from the vomit and spit that bubbled out of her as her mouth and lips turned blue. I could still see her sprawled out on the carpet, shaking, eyes open but seeing nothing. Even though two months have passed and the stain is barely visible now, there are things that trigger my memory bringing me right back to it, and I am flooded with as much fear and grief as I felt that night. The spot is one of those things.

Having had some time to reflect on the night, it is obvious to me that people process trauma in such different ways. I remember sitting at a restaurant with Joe a week after getting discharged from that admission and asking him to recount the entire night, step by step. Reluctant to share his memories, he shut down as I relived every detail, trying to make sense of how I should feel about everything. Joe would prefer to forget what happened that night and avoid talking about anything related to it. I, on the other hand, feel a strong need to talk through and replay the events that unfolded that night and the emotions I cycled through in all of the chaos. Neither of us is wrong in how we cope with our feelings, but for my sake, I need to get it all out, write it all down and hope that as I do so, these thoughts and emotions will hold less power over me.

It happened on a Sunday night. We had just gotten discharged from a 5 day stay at the hospital the Friday before. We invited my parents, my sister and her family over for dinner and swimming trying to create some semblance of normalcy. Avery was having trouble maintaining her sodium levels because of the high volume of output from her ostomy, and we instructed to begin replacing her lost sodium with pedialyte and salt through her g-tube twice daily. She was hooked up to her pump for about two hours at dinner time and she really wasn’t feeling well. She was very quiet and said her stomach hurt, but this was not unusual for her so it caused little concern. After I unhooked her, I took her to the bathroom and noticed that she had peed her pants, which very rarely happens. I got her cleaned up and took her outside to sit on the deck with me and watch everyone swim. She was very pale and her lips looked a little blue and she was shaking slightly so we assumed she was just cold. My parents left early and they have since recalled that she didn’t really respond to them as they kissed her goodbye. She wasn’t answering my questions as I sat outside with her and she just seemed off. I started feeling fear settling in the pit of my stomach. I told Joe, my sister Jenny and her husband, Mike, as much and they told me to bring her inside because she was probably just cold. I brought her inside, wrapped in her blankey, and sat in the rocking chair with her. That’s when the concern grew.

Avery had her eyes open and seemed to be looking at me, but she wasn’t responding to anything I asked her and she kept turning her head to the left. Now before anyone judges me for not noticing the signs sooner, this is often Avery’s personality. She frequently gets really quiet and refuses to talk or look at people when she is in pain or upset, so it made the signs, which should have been obvious, difficult to recognize. Her mouth still looked bluish and her right arm and leg were twitching and I yelled at her, “Avery, you’re scaring me! Please answer me!” But although she kept staring at me, she didn’t respond. Mady poked her head in the back door at this point and I told her to get Joe right away. Joe quickly came inside and started yelling at her, too, trying to illicit a response. It seems obvious now, and we feel a lot of guilt about not recognizing this as a seizure much sooner, but Avery’s history of stubbornly ignoring us when she doesn’t feel good complicated things. I laid her out on the carpet by the fireplace and she began to look like she was choking on something. Joe pried her mouth open to get her gum out and with that a bunch of frothy saliva came out too. Her shaking became more significant and Joe and I were yelling back and forth, “Should we take her to the hospital in our car? Do we call 911?” Mike joined me by Avery’s head as she started vomiting, so we quickly rolled her onto her side. She looked like she was struggling to breathe with her lips and the skin surrounding her mouth turning blue. Full terror and panic coursed through my body and I yelled, “Somebody help her! Call 911!” I felt like she was dying. I immediately put my hand in the middle of her chest to feel her heart beating, and there it stayed, my only assurance that she was still breathing. When I think back on that night, I can still feel the thumping of her heart on my hand from behind her thin and frail ribcage. From behind me I heard Mady start crying, followed by her cousins who all had come in to see what was going on. Hearing the sirens of the ambulance as it came down the street, Joe yelled for me to go get my shoes and purse to go with her in the ambulance. I raced up the stairs, taking two at a time and grabbed my purse as the ambulance pulled up in front of our house. Two paramedics came in, took one look at Avery and confirmed that she was having a seizure. One paramedic scooped her up in his arms, holding her head and her bottom in his hands, with her arms and legs dangling. She looked like a rag doll. That image of her being carried out of the house will stay with me forever.

I knew it was bad when it just wouldn’t stop. She kept on seizing as the paramedic, a stranger, picked her up and put her on the stretcher in the ambulance. She kept on seizing as they started an IV to give meds. This was a girl that would have put up a fight for both of these things and the fact that she just laid there not responding or reacting to everything going on around her scared me. A fire truck pulled up and 3 more men climbed on board, some attending to Avery and some asking Joe and I a barrage of questions. Sodium! She needs sodium! That thought repeated in my head and it was all I could offer them as I managed to calmly and quickly fill them in on her recent medical history. They pulled me out of the back and put me in the front passenger seat where I waited anxiously to hear her cry out for me. It never happened. A fire fighter climbed into the drivers seat and began asking some more questions. After a few minutes, there were shouts from the back to pull out and the driver put on his lights as I heard the sirens start blaring. I asked the driver if she had stopped seizing and he just guardedly said, “They’re still working on it.” After confessing to the first responders as soon as they got to our house that she had started the seizure long before we recognized it for what it was, it became the question of the night: “why did you wait so long before calling 911?” There was a hint of innocent admonishment in his voice as the fire fighter, who was driving us, looked over and advised me that in the future, “you shouldn’t wait so long to call us or try to yell at her to wake her up out of the seizure.” Plagued with worry and fear and with my mind and heart in the back of the ambulance with Avery, I distractedly managed to explain that we weren’t “trying to talk her out of a seizure” and that the second it became obvious to us, we called for help. Though it felt like my head was swirling with what ifs and a whole range of emotions, the one thing that I can clearly remember thinking on that ride in the ambulance was “Please, God, don’t let her die.” I instinctively clasped my hands in prayer right up under my chin and kept them there the whole time as I repeated that over and over all the way to the hospital. Please don’t let her die. Please don’t let her die. The panic only intensified and the reality of the situation set in as we approached one intersection after another, cars moving off to the right and out of our way while the flashing blue and white light atop the traffic signals screamed “emergency” with every turn. I was informed that her seizure had finally stopped as we pulled into the ambulance bay at our local hospital. All told, we approximate the length of her seizure to be between 20 and 25 minutes. Had it lasted another 5 minutes her seizure would have been classified as status epilepticus which carries with it a 1 in 5 risk of mortality. Unlike seizures that are due to epilepsy or from a high fever, provoked seizures are often life-threatening. I only found out all the details of what was occurring inside Avery’s body after the fact, but what I learned was alarming. Her seizure was actually caused by cerebral edema, which is swelling of the brain, brought on by the drop in her sodium. Encased in an immobile layer of bone, the brain has nowhere to go when it swells against the skull and therefore it can cause a whole range of problems some more mild and self-limiting such as lethargy, muscle pain and weakness and urinary incontinence, while others much more devastating and with long-term consequences such as seizures, brain damage and death.

Temporary relief washed over me that they were able to stop the seizure, but as they brought the stretcher out with her laying on it, she looked so still, so pale and weak and just very, very ill. It scared me. I quickly searched my memory for facts I had learned in pharmacy school about prolonged seizures. My biggest concern at this point was whether she had suffered any permanent brain damage. Once inside the emergency room, Avery was quickly swarmed with doctors and nurses all scrambling to get vitals, and labs and run tests. I insisted it was her sodium, but the doctor seemed convinced it was likely a febrile seizure. They took her temperature rectally and it was very low 94 degrees. Definitely no fever. They checked it again and it read the same result. We found out later that the low sodium caused her to be unable to regulate her body temperature. They covered her with warmed blankets and put her in a “bear hugger” which is like a little tent that surrounds you as they pump hot air into it. Throughout all of this she remained still and silent. When they got the results of her labs back, they confirmed my suspicions that it was her sodium at an extremely low level that brought this seizure on. I assumed they would immediately start replacing her sodium through the IV as they had at Lurie Children’s whenever her sodium tanked. After learning the complexities of Avery’s medical history, the ER doctor refused to administer sodium replacement. I was stunned. He said that replacing it at the wrong rate could cause damage to the brain and since she was no longer having a seizure he felt there was no immediate risk to Avery if he decided to wait for her to be transported to Lurie Children’s and allow them to handle her care. I was not okay with that and insisted he call the on-call doctor at Lurie to find out how to treat her. After too much time had gone by the doctor told me that he couldn’t get a hold of anyone, and within 5 minutes I was speaking to the on-call fellow who said she would call and speak to the ER doctor and advise him on how to start her sodium replacements.

We were there for about an hour when Avery finally started to wake up and look around, confused by where she was and what was happening to her. I was never so relieved in my life than when she started getting upset with the nurses who were working on getting her IV fluids set up. She was awake. And she was being Avery. For the first time since this all began, I could breathe again.

It wasn’t until close to midnight when the transport team from Lurie arrived with their ambulance to bring Avery downtown where she had doctors who know her and where she could receive the care she needed. Avery was falling in and out of sleep as the medication used to stop her seizure causes drowsiness and the after effects of a seizure can cause confusion and fatigue. The transport team informed me on the ride down to the hospital that she was being admitted to the ICU because of how low her sodium had dropped and how long her seizure had lasted. We finally arrived in our room at 3am and I was never so happy to be in a hospital as I was that night knowing that there was a nurse standing watch right outside our glass door. That began what turned out to be a 12 day stay during which Avery ultimately received her PICC line which allowed us to go home knowing we could replace her lost sodium exactly the same way they do while she is inpatient.

That brings us back to the day we were discharged and walked into the scene of that horrific night. I have since been haunted by vivid images of parts of that night amidst the background of chaos and panic that is, in stark contrast, foggy and vague in my memory. Every time I have to pull over for an ambulance to make its way through, or notice the emergency light flashing at an intersection, my chest immediately tightens as my mind fills with the sights and the feelings of the ride in the ambulance that night. When I see the pajamas she wore that night, I can clearly see her tiny body being carried out by the paramedic. And that spot on the carpet. It has started to fade with time and most likely isn’t noticeable to an unknowing viewer, but I will always see it. I hope that the intensity of my flashbacks and the emotions that consume and paralyze me will, too, in time, fade. It is also my hope that by sharing the details of this night, it will allow me to face and acknowledge the very real trauma we all experienced and begin to heal.