Life is Like the First Batch of Pancakes
What’s Your Story Guest Blog:
Written by the Allergy Queen (AKA: Trish Gavankar)
Ever hear the phrase, life is like a box of chocolates? It sounds beautiful, I mean who’s complaining about a culinary surprise of a chocolate mix with each bite of reality? But a bite of reality when you live with food allergies may be rather unpleasant, if not deadly.
Last Thursday, my 14 year old daughter and I were having a fantastic mother- daughter day that included plans for respective training sessions with our favorite Lifetime Fitness Personal Trainers, new hair cut and style, hamburger and fries at a local restaurant and school clothes shopping for her freshman year of high school. Kinda normal for many but for those with food allergies; you already know which part has the propensity to bring our fun to a shrieking halt. Food. You see my daughter has multiple life-threatening food allergies, hyper-adrenergic POTS syndrome and mast cell activation syndrome (MCAS). Like mother, like daughter-we both share these complex disorders and we live day to day with the knowledge that the wrong bite of food could re-frame our reality into a hellish scene.
Our over-reactive immune systems hyper-respond to what seems like a nano-particle size offender or allergen. And once this cascade is triggered, a rapid downward spiral into the life-threatening condition known as anaphylaxis crashes into our otherwise fun mommy daughter day and thrusts us into a grueling physical set of symptoms that are horrifying. And as a mother, when your child is anaphylaxis-it feels like they have been drug to the very gates of hell and you are going to need to white-knuckle belly crawl in after them and drag them back out. At least this is how I feel after needing to save my daughter’s life, I lost rack of the actual number of anaphylactic episodes somewhere in the endless loop of terror that food allergies can cause.
I suppose those with food allergic children, know where this story is heading. You’ve been there and I’m sure you recognize the deep, gritty emotional aftermath a battle for your child’s life can bring. Our day was going along rather well, we excitedly discussed if we should eat first or shop for clothes first? Enter, the french fry… A fried food that is safe for both of us? Fries before clothes we like to say! At our usual safe restaurant, we followed our usual process to get our ‘allergy fries’ and plain hamburger patty for my daughter. Not a large selection, but the local managers and staff have worked diligently to ensure that they send us off with full bellies of fried fuel. Admittedly, we gorged a tad on the fries and shortly after our second order of fries arrived, we paid our bill and headed off to our first stop Target.
Strange how the mind has a tendency in memory to freeze particular snips of time and I remember when we hit the clothing section, my precious daughter declared for all of Target to hear, “I LOVE Target’s clothes and I’m not sure I can even trust myself back here! I think I want everything!” In that moment, my mama’s heart was joy-filled and my mind’s eye wants to depict her as spinning with her beautiful hair splayed in the air. Like a wispy mental mirage painted in my mind, but despite all her physical limitations here we were, on our mommy-daughter wardrobe adventure!
After two or maybe three outfit changes, she told me that her stomach hurt. Instant electric jolt and resultant hair on the back of my neck at attention. All food allergic families enter into a time period of indecision when symptoms start, basically “is you is or is you ain’t anaphylaxis?” She says, she doesn’t think so, maybe IBS; after all we did gorge on the fries. I mean not everything is an allergic reaction right? I tell her to go put her clothes back on and I turn to notify a Target employee that my daughter may be having an allergic reaction. Returning to the dressing room, I was jolted by the what I saw. Suddenly my daughter’s typical golden olive skin is very pale, she is VERY dizzy and saying her belly hurts a 10 on a scale of 10.
Without pause, I get her flat on the floor. Now she has chest tightness and a feeling of throat swelling, she asks for her Epi-Pen. I’m in full anaphylaxis mode and I inject, start a timer on my cell phone and yell over my shoulder to the Target employee that I need EMS. Turning back to my daughter, she is coughing uncontrollably. I turn her on her side as I am afraid she might throw up, continuously re-evaluate her symptoms and reassure her. Between intermittent coughing and gasps for air, she demands a second injection saying, “ I need it now Mom.” Pausing only long enough to glance at her face which was turned away from me, I see it. Her face is drawn, eyes are flat-desperate and her skin is ghastly. She is dying, I can see it and she knows it. She feels it. Giving the second Epi-Pen, my mind was screaming and my soul was shattering. Like all parents I start bargaining, I can’t lose her on this dirty floor not my precious baby-not my “Rysa-roo.” Not to this *@@@* called anaphylaxis. Words are spilling out of my mouth, I’m telling her to stay calm and Epi will work-she just needed more. Involuntarily, I turn to look for my purse which contains my two Epi-Pens. If this Target floor is our battlefield, I am prepared to wage war. Clenching my jaw, I choke back the acid in my throat and I tell her to fight.
Time becomes distorted, every second feels like a decade and my thoughts are weighted with the gravity of this moment. I’m looking at her face and see the second Epi-Pen is bringing some color back. She is still coughing but less forcefully and less gasping between. Belly pain, chest and throat tightness down to 8. We are moving in the right direction and my mind grasps at the overwhelming feeling of hope, the ground beneath my knees feels like quicksand. I hear the medic chatter over my shoulder and know an EMS is approaching. Many food allergic families both anticipate and dread this moment, sadly many parents experience a public down-stripping for using epinephrine. Epinephrine works swiftly and sometimes when EMS arrive, the food allergic person looks so improved that parents are often questioned about ‘why’ they treated. This is further complicated by the lack of consensus on the definition of anaphylaxis and when to treat amongst those in the medical community. I bristle and brace, I’m ready for the anticipated verbal sparring match.
Cary EMS #52, Medic Jim Ruble, begins asking me what happened as he simultaneously applies BP cuff and heart rate monitor. He looks at my daughter who is still having a bronchospasm, then looks at the BP and heart rate. We both see the shockingly low numbers and I hear myself saying, “that is post TWO Epi-Pens.” He looked at me briefly and we exchanged a ‘medical moment,’ this was very serious. Out loud, he is saying, “she is going to need steroids, H1/H2 blockers-I don’t like those numbers after two Epi-Pens. We need to get her on the truck so we can get her fully treated and evaluated.” He asks if I’ve seen any hives or rashes, to which I reply she’s never had either in a severe reaction. Jim says, “I don’t care about hives, I can live with that. It’s what I can’t see that’s scaring me.”
Me: Mic drop.
In a cracked-high pitched voice, I plead, “Please don’t stand her, she also has POTS syndrome and her systolic will drop to 60’s.” He looks at me almost quizzically and says, “ No one should be stood up after a reaction. We don’t know how much histamine is in her blood or how low her blood pressure got before the Epi-Pens. I’m glad you gave them both.”
Me: Drop the mic.
Back to the ‘mental memory mirage’… my mind paints Jim standing there with a halo like shroud around him. Angelic. Sent to help us in our desperate moment. He is talking to my daughter, trying to help her understand that the second Epi-Pen is working and he won’t let anything else happen. Meanwhile, his partner, EMT: Marie Johnson, begins to ask my contact information. I crack, as I am thanking them for believing me and not trying to prove me wrong. Then she says, “You know your child. We are here to help her, but you KNOW her. Of course, we will listen.”
Me: Mic drop.
We get into the squad and they begin a team approach. As I am gently rubbing her hair, I hear Jim joking with my daughter, all while skillfully inserting an IV. And despite all she’s experiencing, I see a faint smile. Her eyes are filled with trust. His knowledge of anaphylaxis, food allergies and the critical nature of rapid treatment is staggering. In a rare moment, I can just be ‘mom.” I can fall apart. I can comfort my child instead of being in charge. All while thanking every grain of reality that she is still in front of me and continuously still holding my breath out of fear that she could suddenly worsen. But I don’t have to be in charge. No words could sum up this incredibly wonderful, yet strange feeling.
Arriving at the ER, I hear the medics detailing what happened and explaining that I am a valuable resource as I am an expert in food allergies and anaphylaxis. Tears free fall down my face and my soul explodes with gratitude. Too often, I’m used to being “slotted” as the ‘hyper-protective-mom’ to the ER staff. In the hallway, I hug both medics and tell them this was her worst reaction and I could feel my resolve withering before they arrived. They wanted me to know that I did it, I saved her, I gave her Epi-Pen just as she needed. Words I typically say to countless families who have been battered by anaphylaxis, so kindly being offered to me.
Later I called the shift supervisor of Cary EMS District 5, Mike Prevatte, I let him know that these medics were award worthy in their combination of knowledge, skill set and compassion. And I planned on doing, saying, writing, tweeting, FB’ing until they are commended for their leadership. He informs me that they are not even medics in my town, but were responding to a few counties as the night was so busy. Miracles? Angels? I dunno……..but I’ll take it! Sharing my daughter’s symptoms and lack of hives, I hear a set of words that pretty much just shattered the damned mic.. “I’m not worried about hives, it’s the lack of hives.. that means the blood is pooling away from the skin and the body is in trouble. You did good by giving her epinephrine, I’m so happy she is ok and thrilled that my Cary EMS Team took exceptional care of her.” Tissues for all! Cary EMS District 5 helped my daughter in a deeply wounded moment.
They also helped me heal. I was then able to focus on healing my daughter. We were able to return to our life so much more quickly because we didn’t fill our minds with the shrill question of, “Why did you give an Epi-Pen when there were no hives?” EMS, ER Staff, Allergists, Primary Care Doctors, Pediatricians… PLEASE hear the words of the Cary EMS Crew, and know that your words can similarly fill us with the courage to keep fighting or tear us down and leave us cowering in the corner.
Personally, I do think life is much more like the first batch of pancakes. Sometimes, despite all the right ingredients, you get a doughy round thingy instead of the crisp spongy cake of happiness you seek. Just how it is some days, but we all have the capacity to get it right. And on Thursday…. my daughter and the Cary EMS District 5.. well let’s just say not even chicken and waffles could compete with their awesomeness.
Trish Gavankar, RN, BS
AKA: Allergy Queen
Rock Food Allergies Consulting, CEO
Disney Chefs Rock Food Allergies Founder
2016 FARE Vision Award Winner for Outstanding Community Education
Disney Independant Freelance Writer