I had been waiting on eggshells for this day to come. I’d been waiting since our son, Rory, was 6 months old and diagnosed with a peanut allergy. He was now 3, and I was still waiting.
It was a Monday after work and I was shopping at Whole Foods in the gluten-free cookie area. My husband and I were due to go out of town that Friday and my mom was flying in to take care of the kids. I remember that I was exhausted. I remember picking up a box of vanilla gluten-free cookies, flipping it over, and reading the ingredients. The front of the box screamed “gluten-free!” and “soy-free!” and it appeared to be a company that cared about allergens in food. The cookies had cream inside, which Rory had never had before and I thought would be a special treat for his grandmother to give him. As I was walking away I noticed that the same cookies came in chocolate. I grabbed a second box and threw them in the cart.
I did not read the ingredients in the chocolate.
Fast forward two days, 8 p.m. My two-year-old was up past her bedtime when Rory saw the box of cookies in the pantry. He asked if he could have one and I said yes. They came in a two-pack. He said he wanted two because they came as two and I said, “So do my babies. One for you, one for Moo.” Emily was in a bad mood, took a tiny nibble and didn’t want it. Rory snatched up the extra, so excited about eating a cookie with cream. I took Emily to bed almost immediately so I was not in the room when Rory told his father, “This cream is spicy.”
40 minutes later Rory was watching cartoons on a computer in our bed. He came to the top of the stairs to call down to us that he was itchy. I took one look at him and nearly fainted. The back of one knee looked like it had been attacked by fire ants. I said to Andy, “Think. Help me think. What is new? What did we just introduce to him?” and I remembered: The cookies.
I ran to the pantry, grabbed the box and looked at the back. There were 12 ingredients and hazelnuts were the 10th one. I knew in that moment that I’d never seen this list of ingredients. I hadn’t even read the box.
We quickly double-dosed him with Benadryl and coated the hives in Benadryl cream. Residue from the cookies must have been on his hands and he touched the back of his knee. We threw him in the shower and washed his hair and skin. I sat with him bundled up in a towel on my lap and apologized over and over; telling him Mommy fed him a bad cookie on accident. I was so sorry and it would never happen again.
My son breaks my heart into a thousand pieces sometimes. He said, “Mommy, I think I’m going to be OK with that cookie.”
His eyes were bloodshot so I put an antihistamine drop in them. I asked if he could breathe and he said yes. I asked him to take a deep breath and he did. I asked him to show me his tongue and he did. It looked fine. My dinner was waiting downstairs so Andy stayed in our bed to keep an eye on him as he watched cartoons.
I was downstairs eating when he started to cough. The hair on the back of my neck stood up as I listened. Cough. Cough. Cough cough. Cough cough. Cough cough cough. Cough cough cough cough cough–
“What? I’m here with him.”
“But he’s coughing!”
I ran up the stairs. They were sitting in the dark. I flipped the lights on. His eyes were swelling. He was still coughing.
“We have to call 911,″ I said. “Let’s find an EpiPen and call 911. Bring him downstairs.”
Backstory: We got an EpiPen prescription for Rory in 2011 when he was skin tested at an allergist. The allergist had sent us home without the prescription despite his maximum allergies to peanuts, tree nuts, and cats, and serious allergies to egg, wheat, melon, grass, ragweed, and mold. The mothers on the allergy board of BabyCenter insisted that I call the doctor’s office the next day. When I did, I was told that it was the doctor’s policy to not prescribe anything of any kind for a patient unless that patient was going to sign up for a treatment plan. I shouted, “Exactly what treatment plan does this doctor want a 16 month old baby with a nut allergy to sign up for?” Many threats later, the prescription was called into our pharmacy, which we then renewed through another doctor every year since.
Rory was naked under a towel but Andy snatched him up and we went downstairs. I found the EpiPen. I found Andy’s phone.
“Let’s put him the car,” Andy said.
“No. We don’t have time for that.” I didn’t even know how to get to a hospital; we had only lived there two months. I dialed 911.
“911, What’s your emergency?”
My voice went shaky as the gravity of the moment hit me. “I need to know whether I have to use an EpiPen on my child,” I told the operator. She wanted my address, wanted my phone number, wanted to know how old he is and whether we needed an ambulance. “YES I NEED AN AMBULANCE BUT DO I NEED TO USE THIS EPIPEN ON MY CHILD?” I pleaded.
“Ma’am, I can’t tell you that. You need to calm down. You need to do what your doctor would want you to do in this situation.”
Rory was now coughing to the point he was going to vomit.
“She would want me to use the EpiPen.”
“Then you need to do that, ma’am. Stay on the phone with me. Do not hang up.”
I told Andy, “She says we need to do it. Do we really need to do this? What if he’s going to be OK without it?” I was afraid of the side effects of epinephrine. I was afraid of the pain. I was afraid of being the one to cause the pain.
Three firefighters came running up my stairs into the living room as we were getting clothes on Rory.
One firefighter pulled out a stethoscope and listened to his lungs. He was wheezing.
“You’ve got to use the EpiPen,” he said.
Two paramedics ran up the stairs to my living room. One was a female. She was so warm, so caring.
She took my hands in hers. “Mama, you’ve got to use this EpiPen,” she said. “It has to be you. You are scared and you need to do this because there will be a next time and next time you might not be where we could reach you. You have to learn to do this tonight.”
A police officer ran up the stairs into my living room. There were now nine people in my tiny living room.
Rory was gagging. I read the directions on the EpiPen for the 10th time.
A firefighter reached out his huge hands on Rory’s tiny thighs. The paramedic held his torso.
I said, “One, two, three” and tried to inject the EpiPen into his thigh. I didn’t work. I tried again. It didn’t work. I looked at the woman helplessly. She took it from me, looked at it, and handed it to another paramedic. He retracted the tip to reveal the needle and said there was no ejection; it would eject with the force of me hitting him with it.
Jesus. I knew that. The pharmacist just told me about the redesign in January. Thank God all of these people were here to help me think.
Now I was on autopilot. “One. Two. Three.” Slam.
Rory howled like I’d stabbed him with a knife.
“One, two, three, four, five, six, seven, eight, nine, ten.” I pulled it out, threw it, and he leapt into my arms. I was crushed. I wrapped my arms around his skinny body and said I was sorry a dozen times. This was worse than the time he tumbled out of his stroller onto the sidewalk when he was 2 weeks old. This was worse than when he saw me give the dog away. I was the worst mother of all time.
“Mommy, I don’t want another one of those!” he begged. I promised him there would be no more of those, ever.
Andy came into his line of sight and Rory leapt from my arms to his. The paramedics asked which hospital we wanted him taken to. They asked if I could tell that his cough was not as tight now. No, I could not tell. The swelling was going down in his eyes, they said. I could not tell. He looked like he’d been in a fight.
“Do you like teddy bears, little guy?” they asked. He nodded. My sweet child.
They packed up the EpiPen and the box of cookies. They packed Rory up into the ambulance. They strapped him into a seat and handed him a bear, which he took and hugged. Andy got in beside him. I stood at the back of the truck peering in the windows on my tiptoes, crying. No one knew I was there. They drove away and I came back in the house, sat on the stairs and cried. I called my mom.
What if, what if, what if? What if we were gone to California and Rory asked my mom for those cookies and this whole thing happened on her watch, alone? What would she have done? How far would it have gone? What if he’d fallen asleep before it set in? What if he wasn’t coughing? What if she didn’t hear him? What if he suffocated from anaphylaxis in his sleep?
Andy texted at midnight to say that they were staying until morning. I finally fell asleep and woke at 4 a.m., then relived the entire thing all over again.
Emily and I picked them up at seven in the morning. I called to let Andy know that we were outside of the emergency room. A moment later the double doors opened and out walked my husband with my tiny, beat-up child beside him. I drove them home.
Andy said that the cookies were on a shelf in their hospital room and that as they were getting ready to leave Rory asked, “Hey Daddy, can I have those cookies?”
As I got Rory out of the car he said, “Mommy, I want to go to the spiral slide.”
“Sure Bub, anything you want. Daddy will take you to the spiral slide.”
He gave me a stern look and said, “Mommy, you hurt me with that EpiPen.” A knife to my heart; I can’t believe he even knew the name “EpiPen” now.
Three hours later they went to the spiral slide and Rory wanted to go to school. Andy didn’t ask me what I thought– I would have voted against it. The kid was just in the ER for crying out loud. Ultimately, due to the remaining events of the day, I was glad that I did not get a vote.
I spent the entire morning holed up in my office, trying not to cry, talking to the moms on the BabyCenter food allergy board. Two of them pointed me to the same website, Kids With Food Allergies. One of them said, “You have to read the After The EpiPen section.”
I try, these days, to listen to the universe speak to me. I knew I needed to follow up on what they were saying. I loaded the site and saw the anaphylaxis section. I clicked, but the site wanted me to register to use it. Forget that, I closed it out. I’m not going to register to use a website. A minute later I remembered the universe, went back again and registered.
I read the section. There were hundreds of stories over the last several years about EpiPen experiences but the one my eye went right to said, “Every time the medicine wore off the allergic reaction came back.”
What the what? The reaction can come back when the steroid and epinephrine wear off. It can be worse or it can be different, and the doctor didn’t tell Andy that. I picked up the phone to call him.
“The reaction can come back. He can relapse when the meds wear off.”
“Tell the school,” he said. “You have to warn them.”
I composed an email to the director explaining what I’d just read. I assured her it was not the norm. I told her the signs of anaphylaxis that we’d observed the night before so she would be on high alert. I explained that the EpiPen had been redesigned. It was intuitive to try to eject it but it doesn’t work that way anymore. Andy had already given him a dose of Benadryl but I asked her to dose him again right then. She said she couldn’t give Benadryl without doctor orders if symptoms were not present– it was state law. I had Andy fax the doctor orders over. She called me to say that they were not signed. She could not allow it. Rory was about to go down for a nap. She assured me he was acting normally and that she would keep an eye on him.
At 2:30 the school called to say that Rory was awfully itchy. Andy took off immediately to go get him.
Minutes later I was in the ladies room washing my hands, reaching for a paper towel. The assistant burst through the bathroom door and said, “Robyn, your son had another episode. His school is on the phone.” I ran. The receptionist transferred the call up to the closest desk.
They had EpiPen’d him again. The paramedic got on the phone. They wanted to know where to take him. “Take him right back to Children’s Hospital,” I said. His tongue was swollen.
I ran to the car. I called Andy to change directions. “Go to Children’s,” I said. “He’s in an ambulance.”
I called the school again. Was he stable? Was he speaking? Did he seem like he was going to be ok?
A wreck on the highway held me up 10 minutes, of all the days. I called my brother and wailed. I was going to kill my child. This was entirely my fault. He was going to die from this. For a second I pictured our family without my son in it. My heart.
I pulled up to the ER and parked. The ER doors were at 2 o’clock. An ambulance pulled up to the emergency entrance at 10 o’clock. I looked back and forth between the doors as I approached the building.
My child is in that ambulance, I thought. Nonsense. He had to be here already with how long it took me to get here. My child is in that ambulance. No, that’s not possible. Regardless, I began to sprint across the parking lot in high heels toward the ambulance as a paramedic walked around its corner with Rory in his arms, hugging another bear.
“That must be your mommy,” he said.
Rory recoiled. “I want Daddy.”
I laughed through my tears. “Well, Bub, you’re going to have to settle for chopped liver right now.”
The paramedics told the ER nurse that Rory was exposed to a food allergen for a second time. I had to interrupt and assure them that was impossible. It seems that on the ambulance ride Rory told the paramedics he “…found a bad cookie in Daddy’s car and ate it,” and they believed him.
Andy arrived and the school director was in the lobby waiting to hear that Rory was going to be OK. I went to speak with her and what she said has me firmly convinced that she saved his life. He’d woken from his nap with itchy ankles, at which time they called me and I said Andy was on his way. She dosed him with Benadryl and watched him. He asked for help in putting away his nap mat because other children were still sleeping on the floor. He then began to tell her about how he flew around outside, and how much he loved paper clips.
She knows my child. He doesn’t speak nonsense. This was not like him. She grabbed the list of anaphylactic symptoms. Euphoria and confusion were at the top– I didn’t even know this. Andy would not have known this. She pulled him into her office with the EpiPen and asked if he was alright. He began to cough. His eyes immediately swelled out and blackened. She pulled him into a hug and slammed the pen into his thigh.
Within seconds the swelling was gone. He was normal. He was able to speak to her.
What if he’d been at home? How far would it have gone? What if he’d been asleep? What if he died?
Rory was admitted for 24 hours. The next morning I dropped off my mother to relieve Andy. I was telling Rory that I had to go to work and he held up two wrists with a most serious little face, flashed his hospital bands and sang out, “Power to the rescue rings!”
After a very rough weekend, it was Monday evening before Rory was off the steroids and back to his semi-sweet self. He was back in our bed, watching cartoons, when I went up to fetch a blanket. He said, “Hey, come here. I’m gonna give you a kiss.” I leaned in for a smooch and he said, “I wuv you.”
I melted. He couldn’t have known how much his mother needed to hear those words.
It’s going to be a long time before I’m over this, if ever, really. I spent the next week feeling like I had post traumatic stress disorder and I was the one that caused the trauma. Don’t tell me I saved his life. Don’t tell me I did the right thing at the right time with the EpiPen and the ambulance. I can’t even hear those words. The truth is that I was tired and I didn’t read the ingredients on a box of cookies and I damn near killed my child. That’s a fact. This is going to take a while.