My wild boy: thoughts after Asher's anaphylactic reaction on 8/20/15

When you're Courtney Hutchinson you tend to have a lot of "biggest fears." One of them came true (again) and I'm going to write about it.  Writing out my feelings is one of the only defenses that I have, and it also acts as a healing.  It doesn't feel like it because it makes me feel, and I'm not good at feeling. I'm writing anyway. This is the story of what happened and as I write this, I'm not sure if/where I'll share it.  I just probably need to get it out right now and I'll worry about the rest later.  

***

I do lunch duty at Asher's school on Mondays and Tuesdays, they don't eat lunch on Wednesdays, and then on Thursdays and Fridays one of his teachers is always on duty.  He's covered by people educated on reactions and epinephrine! 

Mondays lunch duty went perfectly. On Tuesday toward the end of lunch, Asher grabbed me and said, "my tongue hurts."  

Food allergy mom alert!  
Food allergy mom alert! 

Mission: Pretend to be calm while internally 
FREAKING OUT
and taking note of all foods 

in his own lunch box and those around him. 

All looked ok, but in Asher's world that doesn't necessarily mean anything.  He develops allergies like other kids develop colds.  I remembered that the day before he ate at least 5 dum dum suckers and figured they had scraped his tongue and the food was aggravating that.  You just can't assume in food allergy world, though.  I told him I was proud of him for speaking up and telling me (because it's so scary to admit you may be having a reaction when an Auvi-Q is strapped around your waist ready to jab you with a needle) and I told each of his teachers.  I walked him upstairs to his classroom and waited around for a little bit. 

I went to the parking lot and waited in my car.  I told him and his teachers what to do if anything else happened (they already knew, of course but I had to say it) and where I would be; thankfully, nothing else happened.  

Fast forward to Thursday morning at 7:20.  He wanted a package of Star Wars fruit snack gummies before breakfast and I didn't mind if it got him to actually eat breakfast in the morning.  Immediately he said, "my tongue hurts" and it all clicked in my head.  He had those gummies in his lunch on Tuesday.  He ate those gummies just now. I checked the label (Again!!!  We check the label at the store when we buy it and then every time he eats whatever we're checking and sometimes just because I have a feeling. I NEVER ignore gut feelings, whether they are mine, Asher's or anyone's.). Everything on the label was safe. 

It could be subconscious, as in his brain knew he ate them last time his tongue hurt or it could be the real deal.  It could be mild, it could be serious.  I had no idea and so I texted his teachers that I would keep him home for 2-3 hours to monitor and then send him in.  

He rode with us to drop Zoe off and was fine in the car.  As always, he was wearing his epinephrine. We got home at 7:50 and he said his throat felt "thirsty and dry." He drank water and by then, I knew that this was probably going south. Kids use many different words to describe what is happening to their bodies during a reaction and Asher used words to describe things he's felt before outside of a reaction. Pain and thirst. 

It's amazing that with all of the planning in the world, your mind still doesn't want to believe it.  That's why it is so important to have a plan in place, so that you can let the plan take over and shut your brain and your heart off.  Which sounds crazy to shut your brain off, but my brain was telling me, "this may be in your head...just calm down, Courtney." My heart was encouraging those thoughts and trying to soften everything. I'm glad I didn't listen to them. 

His stomach started to hurt and I knew. That was 2 body systems and three different areas of his body.  As I covertly grabbed the epinephrine, he went to the bathroom and had diarrhea; I grabbed it, called mom and said, "I'm using the AQ, get over here." I squatted down and told him, we have to use the Auvi-Q and he screamed loud, "I'M FINE, I PROMISE, DON'T USE IT!" 

He ran from me.  

I had the thing in my hand that would save his life and like the last experience with anaphylaxis, he ran from it and tried to hide. Ah, the human condition. 

I saw his head behind the couch and calmly made him come to me while internally I was screaming EVERY SECOND COUNTS!   Last time, I had to catch him and sit on him to administer the epinephrine, but he's getting older and he knows, which is a relief and makes me feel sad.  

He stood up, shut off his brain, and followed the plan this time.  

Before this had happened I thought, "the next time, I'm going to make him do it, or put his hand over mine so that he gets used to the fact that he'll have to do be responsible for using this one day," but all of that went out the window.  The Auvi-Q is quick and doesn't require a hard swing, so I just placed it on his leg, pushed down and as the epinephrine went in, he didn't even flinch.  He said, "I can feel it going through my body," and he kind of sighed.   

THAT was the first moment I thought, "I did the right thing." I got to anaphylaxis before his throat swelled shut. Even if you aren't sure if your child is reacting and you use epinephrine, it's the right thing.  The only wrong thing is not using it or waiting too long.  Still...a huge sigh came out of me too and I thought, "thank God for this device." 

He immediately got really sleepy as I called 911 and asked for an ambulance with epinephrine.  Mom got there first (she was really close already) and as I elevated Ash's feet, we got some things together for her to take Willow (my 2 year old). We were being OVERLY normal as if Asher wasn't lying on the couch with his feet up.

We lucked out and got the pediatric ambulance and the man who helped us was great.  One minute after we pulled away from our home, I noticed that Asher kept nodding off and his lips were white.  I told the EMT that he needed more epinephrine and before he could act, I just gave him the other Auvi-Q.  He said, "wow you're doing my job for me!"  He then reassured me it was the right thing to do because "the sooner the better." 

Asher perked up a little and again, he didn't react when the needle went in.  I thought he would...

The EMT placed an IV while we drove and I watched Ash the whole time.  He wasn't perking up, he wasn't asking questions like the other times and for the first time ever I thought: 

What if this doesn't work? 

What if he never wakes up? 

What if I did everything right 
and it's still not enough?

We arrived at the hospital as I was drowning in these thoughst and a lot of action happened so I didn't have time to take that last one apart and look at it (thank God).  

They ask a lot of questions when you're in the ER, so I was looking at Asher and answering questions and kind of faking an optimism that I wish that I actually felt.  As if my optimism would perk Asher up and we could focus on just watching him to make sure nothing else happened.  

He was hooked up to a lot of things and aside from his heart rate spiking really high a couple of times his vitals looked great. The ER doctor said it was ok if he fell asleep.  Everything in me rejected that idea.  As he slept, his vitals remained steady. I spooned up behind him, put my hand on his back and felt it rise and fall; I was breathing much faster than he was. 

But, we were both breathing. 

I didn't pray, I just asked everyone else to via text and social media. I tried to remove myself from my head and just be. Be with him. After he fell asleep, his daddy arrived from work and my mom went to the waiting room to help my dad with Willow. The commotion calmed down.  

We waited. 

While waiting, I got the most amazing Facebook message from Courtney Brumfield. I only know her from Facebook; I tried to buy a costume off of her for Willow and we became social media friends.  We like one another's pics and statuses and I think she's pretty cool.  That's the extent of our relationship.  This is what she messaged me: 

Weirdest thing. I had a dream last night that I was somewhere and your family was there too. Asher had a reaction to something and had to be given epi and taken by ambulance. It woke me and made me pray for him. Then I just got on Facebook and saw your post.

God is awesome. I don't even really know your family but I feel like He put me in that dream for a reason. So crazy. Praying for you guys.

That was the little ray of light in all of the darkness. God knows. Of course He does, but He put this scenario into the dream of someone I barely know to say, "I'm with you." God is real, of this I'm sure. 

When Asher woke up 2 hours later-TWO HOURS LATER-he was completely back to normal, it was amazing.  In all of the rush, my mom remembered his iPad and he played and played.  He was so  hungry and all I wanted to do was avoid food. After all, we didn't even know what caused this reaction. How could I look at a label in that moment and feel safe? You don't realize how scared you are of food in the days following a reaction.  Almost nothing they offered could be 100% safe.  Then they found individually packaged crackers that we read and none of his known or suspected allergens were in them. They also brought some orange juice and my hand was shaking so bad when I held the OJ to his lips that it spilled over and choked him.  

Good timing, Courtney!  

He finally wakes up healthy and happy 

and you try to choke him?

**applause** 

From that moment on, he ate a lot of crackers, refused most liquids and we just waited it out.  I waited in such relief, it felt like its own kind of epinephrine running through my body.  His allergist (who is also a friend) called me and we talked it out, trying to nail down what hurt him in those fruit snacks (we suspect sunflower). 

People texted, cracker crumbs were everywhere, and then they said, "ok, you can go home!" I think it was at 1:15pm. 

We packed up our things (I forgot my phone charger in the ER, OF COURSE) and left.  We bought lunch on the way home (Chipotle, his safe place) and as I walked in my door the same thought hit me that hit me when I walked in from bringing him home from the hospital as a newborn. 

Now what? 

The what ended up being pretending that nothing had happened. 

Pretending.

Asher kept saying, "I can feel that stuff in my body, it's weird.  I feel wild inside."  Wild inside sums him up on a good day, people.

But I understood what he meant.  Epinephrine is adrenaline and he had it twice.  Plus, he had a wild morning.  Lots of fear, lots of relief, lots of rest and then lots of excitement. 

My wild boy.

Right now it's the next day.  I woke up this morning on high alert and immediately remembered what had happened.  My insides are shaking, I'm fighting tears every moment and I didn't send Asher to school. I told his teacher and I told Asher that he needed another day to recover, but that's a lie.  His mama needs another day to recover.  To watch him play, to make plans, to decide what to do with him to keep him safe.  Even though he was with me both times he had a reaction this week. 

UPDATE

Asher's allergist called today (one day after the event with the fruit snacks) with results from blood work we had done last week. Perfect timing! 

VERDICT: It was the sunflower oil in the Star Wars fruit snacks.  We didn't know of this allergy and he used to eat it fine.  We suspected, but it's so good to know for sure. 

That's the second seed to show up this summer (sesame being the other one). He had no known ingestion of sesame so we weren't sure what that meant (his skin test was very low and his blood test was significant) but now we know to keep avoiding as we have been. No challenging sesame.  We also added lentils and lima beans this time.  We've added 4 allergies just this summer and I'm pretty bummed about it.  

His new allergy list

peanut

tree nut

egg

soy

sesame seed

sunflower seed

chick pea

green pea

lentils

lima beans
lupin/lupine 

penicillin 

*We avoid finned/shellfish 

pending food challenges next month 

On a good note (besides the fact that he's alive!!!) is that the following came back negative: avocado, olives, green beans, mustard, kidney beans, black beans, and rice. 

But he says rice makes his tongue and tummy feel funny and it was a .64, which isn't really a positive. We'll be cautious and probably avoid that too. 

UPDATE 2

I went to church on Sunday and lost it. 

I'm writing this directly after.  I'm sure it was a good thing,  but I'm not like most people who like a big cathartic cry. Especially in public. I know that, if anywhere, I should be able to lose it with my family. I could have...actually, I did...but I hated every minute of it.  

I needed to once again mourn our "normalcy" and to fear what may come. While it's good for your kids to see you process and cry, Zoe (10) kept putting her face in front of mine to stare at me.  I wanted to scream "STOP LOOKING AT ME!" but instead I kept reassuring her how good it feels to get it out and how important it is to cry when you need to cry.  Parenting is so hard in these moments when you have to keep teaching but when you want to fall apart and shoo them away. 

Now my eyes are swollen and there are bits of tissue stuck in my eyelashes and I want to go to sleep.  But, I have to take care of these three kids and purge our kitchen of new, unsafe foods and then go to the grocery store where there are things staring at me in every aisle that could kill my child. We have to reevaluate all of his safe foods (AGAIN) and look up his safe restaurants (AGAIN) before we can go anywhere. 

I have to send him back to school tomorrow.  I do lunch duty and lunch duty has been terrible. It's been effective, it's been safe, but it just amps up my fear and the days I'm NOT there are actually better than the days I have my eyes on him. For me, seeing the possibilities is worse but I don't have another option. 

I just want so desperately to quit food allergy life but since I can't I'm trying my hardest to quit living in future food allergy life.  

UPDATE 3

Last night (Sunday) my Woven family dropped off a basket on my porch filled with the softest blanket EVER, pumpkin coffee, gift cards to my favorite places, cute Fall kitchen stuff and TONS of love packed in there.  It's been a tough week and they knew I needed loved on extra.  Woven is the women's ministry at my church, but it's SO MUCH MORE than that.  We're family :) 

I needed that love because I'm sending him back to school this morning. I'm filled up with 2 things: guilt about not being the kind of woman who can homeschool her child and confidence that this school, this moment is what is best for him as a child. Those two things war against one another in my head at all times. 

I'm confident that under the right circumstances they can keep him completely safe, but I worry that another food will rise up against him and take us all by surprise.  

I'm assuming everyone is thinking, "What kind of mother would choose to send her child to school outside of the home when she doesn't work and he has this medical condition? What kind of mother would put him in someone else's hands? What kind of mother would put that on someone else?" What kind of mother?

I'm sorry for putting those words in your mouth, it's just the commentary running through my head. 

Closing the computer as I prepare to leave the house and drop him off...

...

The drop off was uneventful and much like a normal day.  Because it is for him. 

I go back in a few hours to monitor lunch while they eat.  Seriously, they have this DOWN at Covenant.  I just open up containers they can't operate and wipe hands after they eat. I watch them play at recess and wander the playground.  It's a good gig...seeing him in his natural habitat haha.

I think that's all I'll write.  I could go on and on, telling you my process daily in the days to come but it doesn't feel purposeful anymore.  I just ask that you pray for my mind, pray for Asher's body, pray for our family.  This is our life and it's one of the hard parts, but I trust you with it. 

I'll leave you with a picture of my brave, strong boy!