JuliaRyan.com. Powered by Blogger.

Social Media

What does an allergy attack look like.

May 2, 2017

"Make sure you're sharing from your scars, not your open wounds."

I need to talk about the two times in less than two weeks my son was transferred by ambulance-a Critical Care Transfer Unit-from one emergency room to second larger hospital and admitted to the ICU.  I know this could have been written better but sometimes done is better than none.

The first episode was from a near-fatal asthma attack (Status Asthmaticus) and I can talk about this one a bit easier because I can blame others and point fingers and be the sole hero of the story.  I can wash my hands of the blame.  Who can I blame?  The kid who brought strep to school; the pediatrician for missing something--a wheeze, an early sign of strep despite a negative rapid culture; the inventor of the rapid strep test for giving false hope to sick patients, a previous ED doctor who treated him without oxygen when his oxygen saturation levels dipped below 90 stating she felt it was fine because he was laying down and thus giving me a false measure for future attacks; the pulmonologist for not having him on a high enough dose of his maintenance drugs.  See?  Not my fault.  But of course, I carry the weight of it all.  I'll share more on this story later this week. 

The second episode was anaphylaxis from a food allergy and I am both the hero and the villain of the story; something I'm not sure I will ever be able to fully forgive myself for.  It was my fault---he would never have tried a bite of something new without my okay.  I handed it right to him and told him to eat it.  Of course it was an accident, of course.  But I know it could happen again and it might be my fault again.  That's a strange spot to be in for a mother and where most of my nightmares and anxiety stem from. 


So that's where I'll start.

It was an unusually warm and sunny February day and Tagg had just finished his last round of meds from a recent hospital stay for asthma, an ICU stay in fact, and I was itching to get us all out of the house.  Somewhere along the way, I had promised the kids a trip to toys r us.  Most likely a bribe for reaching the end of that big bottle of prednasolone.  I was feeling both generous and beat down and the kids each picked out a big set--screw the blind bags.  Tagg a Disney Cars raceway and Wells something shopkins.  It sounds like a pretty cut and dry decision but anyone who has ever been in a big toy store alone with a five year old boy and six year old girl knows that there was nothing quick or logistically easy about it.  By the time we left it was just after noon on a Sunday afternoon and we headed into the grocery store during one of the busiest shopping times of the week.  It was bustling with post-Church meanderers--the ones that travel in groups of four or five headed up by a mom trying to get her shit done and a husband and multiple children too big to ride in the cart looking bored and blocking the aisles at every turn.  As if navigating a crowded store with my own two children wasn't stressful enough we were at a newly opened grocery store and I hadn't anticipated the samples.  Enter sad defeated face emoji. My daughter, giddy over the stands overflowing with little bites literally at every turn scattered about throughout the store running around like she was on a scavenger hunt and my son in tears because he didn't get to try anything--he's allergic--and me extra stressed that food was literally all over the hands of everyone at the store.  Little trace smudges of poison lurked at every turn.  "Oh come on mom, it's just a cookie" "doesn't he like yogurt-kids love this yogurt" "who wants a treat" --the background music.

I stopped to grab some kind bars for my husband when a woman standing next to me said, "if you like those you'll love ours.  Want to try one?  Kids love them and we have a lot less ingredients in our bars."  No, thank you.  "I want to try one!" chimed in my daughter as she grabbed one off the napkin.  "What about your son?" she said.  I explained his food allergy and braced myself for the typical startled face mixed with pity we are usually met with, but was instead surprised with her words: "I have food allergies too.  That's why I started this company.  I'm actually the founder.  I wanted to create something safe that I could eat with as few ingredients as possible.  Just organic, natural, food.  Blah Blah Blaaaah Blaahmp Whomp whomp whomp."  I can't remember everything she said in our three minute exchange except that something made me think it was safe for Tagg.  His allergies were to dairy, egg, and peanut.  Tree Nuts were safe for him.  He's had almond milk before.  I handed him a bite sized piece of a granola style bar containing cashew butter and it may well be the single worst mistake I've made yet.  **We later learned that he does in fact have an allergy to tree nuts and that his IgE levels for cashew are extremely elevated.**

"My tongue feels funny."  I can't explain the absolute dread and fear that flooded me at that moment.  The best way I can describe it is to imagine putting your child on a roller coaster and just as it's about to head downhill and turn upside down they whisper that they forgot to put on their seat belt and you're standing 100 feet below on the ground.  Helpless.  They could be absolutely totally fine or the bottom could fall out. 

My heart is racing and my head filling all at once with conflicting messages.  He's fine.  Don't over react.  He needs to drink some water.  He's not okay.  This is it.  You know what to do.  He needs the epi-pen.  We need to leave.  He's fine.  It probably just went down the wrong way.  Get him some water.  It was just a bite-a lick really.  He's not allergic to cashews.  He's not allergic to tree nuts.  He's not okay.  There is fear in his eyes.  He's afraid.  He needs a hospital.  An ambulance.  Not again.  This can not be happening again.  It's happening again.  I'm paranoid.  Overreacting.  Irrational.  He's fine.  We go to the car.  He's not fine.  He's struggling to breathe, speak.  He's wheezing.  Throwing up.  I think of Oakley Debbs.  Oh God.  Please God.  Oh God.

I set him down in his car seat and get the epi-pen from my purse.  It's in the front seat.  In my purse.  I already set my purse up front.  When did I do that?  How did we get here.  We're in the parking lot.  I pull the top off the shot and throw my weight along with the needle into his thigh.  Wells is screaming.  Tagg is screaming.  I'm not screaming.  I have no words to scream.  I'm still thinking of Oakley Debbs.  I call 911--something I do often in my dreams.  I'm driving towards the closest hospital.  We're already out of the parking lot.  911 tells me to pull over but I don't.  We're on the border between two counties and I know when she finds out where I am she'll transfer me to the next county over.  An ambulance hasn't even been dispatched yet.  I know we can be there fast.  Faster than waiting on an ambulance.  I have the response times memorized.  I hang up.  I ask Wells to read me Tagg's numbers.  He's wearing his pulse-oximeter.  I don't remember slipping it on his finger.  But it's on there all the same.  His heart is racing.  911 calls back--something they do if you hang up on them.  This time it's the dispatcher from the county we're now in.  I tell her what happened and where I am headed.  She agrees.  Keep going-don't pull over.  She offers to stay on the phone with me until I arrive but instead I call my husband and ask him to meet us there.  I'm sorry. I'm so sorry.  I'm so so sorry.  He tells me not to apologize.  I did the right thing.  I gave him the epi-pen like I should.  It's not my fault.  It is my fault.  Tagg is saying that he doesn't feel so well.  He begs me not to take him to the hospital.  He's so scared.  I lie and say we're not going to the hospital, just to the doctor to get a check up.  I need him to stay calm.  I go around a line of 8 or more cars waiting to make a left turn onto the highway hoping my flashing lights will excuse my erratic behavior and poor driving etiquette.  Moments later as I turn off our exit he knows I'm lying.  I pray.

I pull up under the EMERGENCY awning and grab Tagg in my arms.  I tell Wells to follow behind.  The key is in the ignition.  The car is still on.  The doors are all open.  I must have put in in park because it hasn't rolled away but I can't even remember leaving the store.  I carry him into the lobby.   "He's having a severe allergy attack.  I gave him the epi.  His numbers are low and he needs oxygen" The words slip out of my mouth calm and steady and strong, but in my brain all I hear is a whisper, desperate and pained, "I did this to him.  It's my fault.  He's going to die and it's my fault."  I think of Oakley Debbs again.  I think of all the other children who have died from anaphylaxis.  He's on a oxygen and hooked up to an IV pumping fluids and drugs into his little body.  He's loosing consciousness.  No one is moving fast enough.  They don't move fast like you see on TV.  I go over his history.  Meds, allergies, his recent ICU stay, his previous reactions, hospitalizations.  He stirs and throws up again.  Wells complains of the smell from the furthest corner of the room where she is sitting on the counter.  She's scared.  She shouldn't be here.  None of us should be here.  The doctor comes back in the room and we discuss having him transferred.  She let's me know she's already contacted the other  hospital and they're on their way. I knew that was going to be happen.  We've been here before.  She assured me this was just a precaution--because of his history with asthma--that he was being admitted to the pediatric floor--just a precaution.


______________________

You see, there are only ever three scenarios you read about.  Not that others don't exist but the reality is many of us don't hear about them.

1. A slight reaction that requires benedryl and a watchful eye.
2. A severe reaction that requires a shot of epinephrine and four hours in the Emergency Dept.
3. A severe reaction that tragically ends in death after a delay of administering epinephrine.

We experienced a fourth scenario, a very severe near death reaction that required intensive care despite immediate use of epinephrine.

Here in lies the crux of our story.  It's interesting that I'm noticing that even now as I write my words above have gotten choppy and quick; as though my brain can only handle drudging up tiny bits of the event a time.  And now I'm stalling.  My sentences are getting longer.  My brain has literally forced me to take a break before going on with the story.  Gah, our brains are incredible.  Protecting you through distraction, procrastination, and blocking things out altogether.  But I know I need to face this memory in order to move forward and heal. 
______________________

Matthew arrives to pick up Wells.  I'm telling jokes and taking pictures and texting my mom.  Studying the charts on the walls.  Sneaking Tagg extra stuffed animals from the cheer up bin.  Anything to keep my mind off what is happening.  As they load him in the back of the ambulance I take his picture and point out the awesome buttons and knobs and levers.  I complain dramatically to him that it's not fair he gets to ride in the back in the fun part and I get stuck up front in the boring part...again.  I tell him it smells like gas and to try not to stink up the place so much.  I ask him if he thinks the driver is really a ninja.  I pull out every razzle dazzle tool in my kit to try to calm my five year old relying on his little boy imagination to find the light in the dark situation.

This time I sneak back to my car and follow behind the ambulance rather than riding up front.  I learned my lesson last time that discharge doesn't always come at a convenient time and it's nice to have your own car when you get to leave.  I prayed the whole way there that we would both get to leave in my car.


We pulled up to the Emergency Department side entrance and my mom and brother were waiting on us.  Tagg was wheeled out of the back of the ambulance and straight up to the pediatric floor.  He looked fine.  Thank god.  Thank you, god.  He's okay.  I was suddenly embarrassed that I'd called my mom and left her waiting at the hospital for a false alarm.  My brother had delayed his five hour drive home to check on us. I told them to leave but they didn't.  I sent my brother down to the car to get Tagg's toy so he could build it for him.  It seemed slightly serendipitous that we had a brand new distraction just waiting to be unwrapped.  See, this isn't as bad as it could be.  I'm prepared.

Tagg begins to itch.  His oxygen saturation level is steady at 92-94 despite being on oxygen.  His pulse and heart rate aren't in normal range but they're not quite freaking me out either.  I've studied these numbers and I know what to watch for.  The nurse keeps telling him to stop scratching.  It annoys me that she's annoyed.  I mention his numbers as my eyes remain on his vitals and question if he needs something more.  I'm not a nurse.  I'm not a doctor.  I'm so very far from a medical professional and I don't know what he needs but I know he needs something more..  He's coughing again.  Wheezing.  And itching.  His numbers are moving in the wrong direction.  His blood pressure is dropping.  I'm laying in the bed with him careful not to squeeze.  Careful to remain calm and steady for him.  My mom keeps going to the hallway.  I'm so thankful my she and brother are there.

A few new nurses and a doctor (student) come in and everyone keeps question his heart rate.  He's no longer playing with his toy.  He's having a hard time talking or staying awake.  We look and his entire body is covered in hives.  I tell them he needs another shot of epinephrine.  That sometimes one isn't enough. I mumble on about biphasic reactions.  There are now several nurses in the room and I'm standing in the corner watching.  Helpless.  Terrified.  A nurse gives him a second shot of epinephrine in his arm.  I have no clue the drugs being administered by IV.  He's still on oxygen.  We're somehow left alone in the room for a minute.  Or maybe we're not.  I think his nurse is still in the room at this point but I'm no longer confidant she is adequately handling the situation.  Tagg is no longer coughing or visibly wheezing but that somehow seems worse.  He begins foaming at the mouth and loosing consciousness.  He's pale.  So pale.  I run to the nurse station to relay this information and everyone behind the counter runs in.  The nurse who looked like the big boss of the others asked her staff why she wasn't notified a nut allergy was on the floor.  They move fast like you see on TV.

I'm ushered out of the room by an angel nurse who hugs me and lets me cry.  She tells me he's going to be okay and that she's praying for him.  I've seen enough Greys Anatomy to know it's never good when they make you leave the room.  My mom brings me my phone and says I need to call Matthew.  I know she's right.  He needs to come.  Now.  I had to give him the opportunity to come say goodbye to his son. 

A doctor finds me and tells me they're moving him to the ICU.  What they don't tell me is that he's in Cardiovascular Collapse--Cardiac Arrest brought on by progressive respiratory failure and shock.  The foaming of the mouth is a seizure-like symptom brought on by a lack of oxygen getting to his organs.  His lungs were no longer moving air.  His blood vessels were collapsing.  There is more but it's all information I learned after the fact and none of it was important in the moment.  The only important thing is that he survived.

He survived.  
 For my fellow food allergy mamas, this is a story with the most happiest of happy endings.  I want this story to inspire you to be courageous and diligent and an advocate.  To trust your gut and block out the rest.  I know, I know, it's your worst nightmare.  It's my worst nightmare too.  You're not alone.  

For everyone else, I hope this gives you a tiny glimpse into a world you may not fully understand.  To have less contempt and more empathy when you see a *no nuts* line item on the bottom of the class list. In addition to the constant worry of stranger danger, and bullying, and broken bones, this constant fear is the undercurrent of our motherhood. 


 I certainly hope that I have shared our story from place of healing and as an act of service to everyone suffering from life threatening food allergies and to the mama's that work diligently and constantly to keep their loved ones safe.  I can't imagine going through an emergency such as this and not needing outside help.  There is much to be done to get you and your child mentally well after a traumatic injury or illness.  Never be afraid of reaching out.
______________________

Resources:
Food Allergy Action Plan
Epinephrine Access Information
Anaphylaxis Signs and Symptoms
After the Injury help for the mental well being of children and caregivers following hospitalizations
After the Injury when to get outside help


Pin ThisShare on Tumblr

25 comments:

  1. Oh goodness Mama, I can't imagine. Reading this is so scary and so heartbreaking. I'm so very glad for the outcome though. Thank you for sharing into a world that I had no sight into and that I didn't understand when reading the class allergy list. Your words are going to work a lot of good!

    Erin, Attention to Darling
    www.attentiontodarling.com

    ReplyDelete
  2. Thank you for your bravery and vulnerability in sharing this painful experience. My prayers are with you and your family.

    ReplyDelete
  3. My heart is in shreds for what you, Tagg, and your family were going through. I hate saying things aren't fair, but damn it, this is not fair. Thank you for bringing more attention to this. I will continue to pray for you guys! Hugs!!!

    ReplyDelete
  4. I'm so sorry you and your family had to go through this experience, it must have been beyond terrifying. Thank you for sharing this knowledge and I hope you know that you're a warrior momma for advocating for your son. My prayers are with you all.

    ReplyDelete
  5. Oh my Julia! I had no idea that his food allergies were this severe. He survived. Thank God and you.

    ReplyDelete
  6. Wow - I can not imagine having to go through this and having to always be thinking about what could happen. God Bless you and your family - glad that this story has a good ending. Stay strong - you are a wonderful mother.

    ReplyDelete
  7. i don't even know what to write. I feel so bad you, Tagg, and family went through this. My heart ached reading your post. Thank goodness you trusted your instincts and ran to the nurses station. I know we aren't doctors, but we do know our kids. You are a smart, brave, strong, and loving mother! Tagg's allergies have def opened my eyes to the dangers of food allergy exposure! Wishing you and your son (and family) bright days ahead and lots of laughter and joy!

    ReplyDelete
  8. I'm a mother of an allergy child and I cried reading your story. Thank you for sharing and bringing awareness. I have nightmares where I freeze or do all the wrong things. You were so focused and brave and Tagg is lucky to have such a smart mama.

    ReplyDelete
  9. My heart is pounding...old fears and anxieties came flooding back as I read in the rushed chopped cadence of your nightmare until "He survived". Thank God!
    I am not the mother of an allergy child, but the big sister of a little brother born with a congenital heart condition dubbed "blue baby" for the color of his lips and fingers
    caused by a severe lack of oxygen. It brought back the hopelessness I felt everytime he lost consciousness in my arms.

    My heart goes out to you and your family because I know how it feels...even some 63 years later and "he survived". Your beautiful boy was born into the arms of an amazingly strong mom and supportive family. How wonderful you all have each other. I'm sure you've brought awareness to many of us. Thank you for putting it all into words and sharing.

    ReplyDelete
  10. Oh my heart goes out to you and your family. My almost 4 year old son is allergic to peanuts and we have experienced two instances of anaphylaxis. So terrifying and I wish people had a better understanding of how severe these allergies are...so thank you for sharing! We started oral immunotherapy for his allergy recently and we are hopeful it will give him some freedom (or at least protection) down the road.

    ReplyDelete
  11. I'm in tears reading your story. I, too, am the mom of a little boy, almost 4, with severe allergies to eggs, peanuts and tree nuts. Your story is my worst fear realized. I have so many emotions coursing through me at the moment I can't even think quite straight to tell you what I want to tell you - that you're an awesome mom for staying so strong for your son; for being his advocate when he needed you the most; for staying by his side and comforting him when you were terrified he wasn't going to make it. I wish people would understand the severity of food allergies. I wish parents wouldn't roll their eyes when they see that their kid's classroom is a "egg free/nut free" zone because of my child. I just wish people would talk more about food allergies in general. It's such an important topic and one that is rarely thought about. Thank you for writing this. I wills surely be sharing this with my friends. {{HUGS}} ~Samantha Welch ("happyscrappysam" on IG - that's where I found you).

    ReplyDelete
  12. Oh, thank you for sharing! I have peanut, tree nut, seafood, shellfish allergy and I used to just have reaction #1 and would vomit once and need benedryl. Over time, it turned into reaction #2, where after the benedryl wouldn't cut it and I'd have to head to the ER for epi. Now, it's worse and I've had two biphasic reactions and have been discharged and actually had to head back to the hospital. You were exceptional in this situation! I can tell you I never blamed my parents ever for any of my allergic reactions. They always checked and people gave us the wrong information time after time. This awareness is so important! I can't tell you how many times nurses and hospital staff have asked me why I ate something (like it was on purpose!) or questioned my husband and I like we were at fault. Now, I stick with what I know is safe and always pass up a food unless I've heard from the chef (and I make the waitstaff go ask the chef before they give an answer) directly that it is allergen-free. You are an awesome mama!

    ReplyDelete
  13. I have learned so much by reading your post. The bravery it took to write it is amazing and it has brought so much awareness. I hope if I ever find myself in an emergency situation I will handle it with as much grace as you and your husband did. (I love that he told you to stop apologizing, it sounds like you are a true team.) Thank you so much for sharing your story. You are amazing!

    ReplyDelete
  14. Thank you thank you thank you, God, for protecting this child!!!!!! My daughter is allergic to peanuts; we just hit one year since her first reaction and diagnosis. One year of awareness, one year of anxiety, one year of fear, one year of scouring food labels, one year of reprimanding family for letting her hand the dog a natural dog treat (with, of course, peanut butter in it). I am so so so so sorry that you and Tagg have had to go through the ringer thus far. Thank you for being a resource, for reassuring us fellow allergy mamas of what to do and what you did and how it worked. Thank you for trusting your instincts -- you have saved your baby's life over and over and over again. You are not to blame -- how could you have known he had a cashew allergy?! Praying for peace for your family, praying thanks for his recovery, and please dear God give them an uneventful season of good health!!!!!!

    ReplyDelete
  15. Oh Julia, your stories always are so painful to read. I am so sorry this happened to you, and you should bear no guilt. Reminds me of when we discovered our Emma was also allergic to tree nuts - a cookie at a Christmas open house allowed by my mom ('Mimi'), she has lived with the guilt but we had been told no allergy to tree nuts. Now, as I prepare to launch her to college, my worries/fears reach a whole different level.
    And just last week - my 15 year old, who never showed signs of nut allergies, diagnosed with Cashew/pistachio/mango (who knew those are all related?). I HATE NUT ALLERGIES!
    Thank God your boy (and you) survived! May that never happen again.
    xo~Jill

    ReplyDelete
  16. Oh Julia. My heart is tearing apart again and again as I read this. I thought your first synopsis was brutal enough. I've experienced a child with a febrile seizure and had no idea what was going on and I also ditched the ambulance and sped to the hospital unsure if he was dying, so I feel a tiny sliver of your anxiety and pain. You are so strong and such an amazing momma to those wonderful kiddos. Thank you for sharing your story. I am hyper aware of the allergy situation and am impressed at how well kids and schools today are championing the cause. My son's grade outlaws any nut snacks, nothing in classroom, and birthday celebrations are non-food events. It is refreshing to see these 3rd graders proudly taking care of their own. I hope Boston provides some clarity and relief to your sweet boy and your lovely family. Lots of love and healing. You are amazing.

    ReplyDelete
  17. i almost lost my husband a few ago to an unknown food allergy. we knew about the others but he developed a new one and caught us so off guard. within minutes my huge hubs was a puddle on the ground and the epi that i had put my hopes in had done little to bring him back. thankful for wonderful emts and doctors that brought him back but it is just like you never know. you read all the labels and do the best you can do ....♥

    ReplyDelete
  18. I know it's hard to remember this, but remember: you are the HERO of this story! You investigated ingredients; you responded immediately; you trusted your instincts; you alerted nurses; and you cared for your daughter all the while. I'm terribly sorry you all experienced this, but I'm so happy to hear everything has turned out well.

    A fan of your blog and a big fan of this difficult and honest post. Kudos.

    Erin
    Allergy Shmallergy
    shmallergy.wordpress.com

    AllergyStrong
    allergystrong.org

    ReplyDelete
    Replies
    1. This. You are indeed the HERO. xo

      Delete
  19. Oh Julia I just want to reach through the computer and hug you and Tagg! I am so sorry this is your story but I am so so happy with the ending. I know everyone has probably said it but none of this if your fault, you are a hero, you knew what to do in both situations. Being an allergy mom has to be so hard and I cannot even imagine what you go through on a daily basis. My nephew was recently diagnosed with a severe egg allergy and it's been eye opening to see allergies from a different angle. Sending lots of love and prayers your way!

    ReplyDelete
  20. Dear Julia, my heart goes out to you. I cannot image what you feel like daily and this terrifying story just made me so much more aware of what a food allergy is really like. Thank you so much for sharing your story. I am so thankful Tagg is okay after such a scary story. Sending you hugs and prayers of comfort. Much love, Shannon

    ReplyDelete
  21. OH Julia, I saw all of your posts on Instagram and prayed for your sweet boy, but I didn't not read your blog until now. You are amazing and I need to reread and make sure I'm learning from your horrific experience, as my tears are making it difficult to concentrate on the details. My son has an epi and we have never had to use it but this teaches me how careful and more cautious we should be. Sweet Jesus, thank you ! Continue to bless this child and his amazing Momma and most loving family. Amen!

    ReplyDelete
  22. Just another appreciative reader writing to say that I'm so impressed with your strength and focus in dealing with this harrowing situation, while my heart aches for the pain and fear your son, you, and your family had to live through. I'm sure the uncertainty and threat you live with daily can feel crippling at times, but you are such an amazing woman and mother--an inspiring hero as others have said. Thank you for having the courage and generosity to share your story so that others, including myself, can learn from and be made aware of the seriousness of food allergies. Perhaps some sort of high-profile national campaign could be created. Short warnings on class lists seems so insufficient. Other parents, adults, and children need to understand and be boldly told that some food items act like poison to some children. And please don't let the fact that you--as all parents--are imperfect overshadow all the good you do and love you obviously have for your children. Wishing you fortitude, peace, and many blessings!!

    ReplyDelete
  23. God bless you and your beautiful family. I am so relieved your story had an eventual happy ending and my heart just goes out to your right now. I cannot imagine the fear, as a new mom (to a tiny one-month-old baby girl!) I'm keenly aware of what may happen when we begin introducing solids and potential allergens later this year. Thank you for sharing your story and your strength - you're an inspiration! Huge hugs to your sweet boy <3

    ReplyDelete
  24. I have been a quiet reader of your blog since I was in college (I just turned 24). I so so appreciate this post because I can only imagine the courage and strength it took to tell your story. Though I have never commented, I read this post with such intensity and was so moved/inspired by your words. I certainly will have more empathy and understanding next time someone says they have food allergies, as I never realized how much it can alter one's life. I suppose I just want to thank you and let you know your words matter, even to those you may never even expect them to touch (like this Boston based girl!) Wishing you and your family a fabulous start to summer... you certainly deserve it!

    ReplyDelete

Thanks for joining the conversation!

 

Julia Ryan© Theme by Blog Milk