Our1Chance

We have kept her alive for 7 years!

On her seventh birthday we celebrate her, and give ourselves a tiny pat on the back for keeping her mostly safe for all these years. I always go back to this blog post and re-read my words and feelings from the night we felt the full wrath of living with food allergies.

Last night we experienced our worst parental fears in the life of an allergy kid.   I guess we knew it would happen eventually, we were just extremely proud of our 3 year track record of defending our little angel from the foods her body considers toxic.   To set the scene she is allergic to (in order of severity) Dairy, Egg, Peanuts, Tree Nuts, Shellfish, Fish, Wheat, Soy.  Based off the 3 rounds of skin testing; and backed up with a thorough blood workup we are able to assess the severity of her allergies; but the top line reaction we were hoping to never experience.  (BTW she is allergic to cockroaches based off her blood work, lol )

We can’t even begin to explain our methods of keeping her safe on a daily basis.  Everything from her own placemats at the table, to completely changing the family’s diet to be safe around her and not have to explain why she is eating one thing and we get to have something else, to buying hand soaps to replace our families’ homes’ almond cream soaps which would contaminate their contact hands, to ultimately even buying our own mobile kitchen (our camper) so that we can vacation or stay overnight anywhere where we would need to eat and prepare food.

Take you quickly to last night.  We were at a friend’s house for dinner; and as always Jen prepared Shayla’s meal to bring with us.  She deliberately made the same items that we were going to be enjoying at our get together so Shayla doesn’t have to feel “different”.  Made a small batch of pasta salad (quinoa pasta) Burger (bunless) Even brought safe cookies for dessert.  On the “Adult” table were the chips and salsa.  The Hint of Lime Tostitos that I love so much, but we never get because we know there is dairy in them.  Not sure what they need dairy for, but you learn quickly; there are a LOT of things with unnecessary ingredients in our processed food supply.  (How about some sandwich meat having dairy in it.. figure that one out for me) While the kids were playing in the yard we enjoyed some of those awesome chips and salsa.  As a note we do have whole corn chips normally around our house.  The organic, all natural ones that have corn in them, fried in corn oil; and nothing else.  (kinda the way it should be you think)    Skip to the end.  After dinner was cleared the platter of chips was still around and after seeing the other kids casually take a couple of chips and dash off into the yard to play, Shayla naturally wanted one too and reached up and took one.  She didn’t know and we didn’t notice.  Until…

She took one bite out of the corner of a chip.  A super small bite; like the kind of bite to taste test it first.  Jen and I looked her and then back at each other and then back to her and shouted.. “She can’t have that!” Jen jumped from the chair and smacked it out of her hand.  Without hesitation she runs and grabs wipes as I run and grab Shayla’s “Medicine Bag”.  In the bag is a bottle of Benadryl, two Epipens (because 1 might not be enough or might not work), and her Albuterol inhaler; She is never without it.  Trying to keep calm I said skeptically, “It will be fine, she just had the smallest bite of the corner of one small chip.  And it’s not like she ate a whole piece of cheese.  It’s just the powder, the seasoning on the chip that might have a little sour cream dust on it..???”  I expected hives; which appeared within a minute around her mouth.  I prepared for a possible vomit or something similar and that’s about it.  I really believed that there was NO WAY the tiny amount of intake would amount to much of a reaction.  After a few minutes she ventured back into the yard to play with the kids.  Still being calm I was confident it couldn’t escalate too much farther.  About 15 minutes later she dizzily walked back over to the patio we were sitting on, and fighting for every breath; she said… “I…. need… my…. inhaler.”

OH MY GOD.  We sprung into action.  As calm as can be expected, as to not induce any traumatic anxiety; we ventured into the house where we can see she is struggling to breathe, bright red, feverish, blinking slowly, mucous pouring out of her nose, and hives.  Not to mention drooling.  We tried to administer her inhaler, but she couldn’t even breathe enough to pull that off.  We knew then it was time for the hospital and the cap was off the EpiPen.   Our hosts offered to keep Leighton while we head to the ER.  So we did and are so incredibly thankful they could.

What’s happening to us right then.  It’s not about us… but my heart is in my throat, I can feel the beating of my heart in my earlobes… I can’t look at Jen because she is shaking and crying; mascara down the cheeks kind of crying.  If I look at her it would in turn make me cry and I just can’t do that for Shayla’s sake.  She needs to be as calm as possible.  Anxiety increases anaphylaxis (blood flow and pressure).  I want to give her the pen but am so scared.  Worried I’m overreacting.  Worried it wouldn’t be necessary.  As we frantically look online at the medical care facilities nearby (and open for business besides the hospital 20 minutes away); we knew the only real option was the 20 minute ride to the hospital.  Do we call the ambulance? Do we drive?  We have to drive.  We have to go now.   Jen and I both agreed I would give her the Epipen in the truck and she would drive.

20 minutes… the LONGEST in my life.  After about 4 minutes of being in the car, Shayla was struggling worse than before and extremely hot.  Fighting for every breath and not able to say a full word.  Feverish, the kind of fever you can feel from a few inches away.  I knew right then I couldn’t wait another minute.  She needed the shot and she needed it NOW.  I was terrified.  Not terrified of the shot, or administering it; rather of how much it will hurt her.  How will she scream? She can’t even catch her breath to say a word…..  I showed the Epipen to her and said “Ok sweetie, I have to give this medicine now.  Do you want me to?  She said “Yes” It’s going to bite your leg but you will feel better”   All I could think about is that it had to work.  It just couldn’t fail.  I couldn’t fail.  I can admit it today, but she wouldn’t have made it to the hospital if I didn’t.  So BAM…………. and press hard, hold for 10 seconds.  Trying to keep calm as my sweetheart looked me in the eyes with disbelief that I would be hurting her this bad.   The eyes… the ones I only see full of smiles are now looking at me in terror.  She screamed a scream I’ve never heard.  I kept pressing.  And counting.  One one thousand, two one thousand…  She kept screaming.  “Why is that hurting me so much!!!!!?????” She yelled.  I hear Jen crying while driving….

We see a police officer at a convenience store….. pull over….. Excuse me can you help us get to the hospital? Through this traffic?  “Um… I CAN’T do that?!  That’s Taboo.  If you got into an accident I wou……..”  Jen peels out of the parking lot.  (That’s about all I have to say for that waste of 40 seconds)

After about 3 minutes Shayla is breathing a little easier.  We are playing all her favorite Frozen songs off the CD permanently installed in the car radio.  I’m Singing,  Jen’s Singing,  Shayla is smiling but can’t sing.   I open the window.  I close the window.  Fresh air.. No she’s cold.   We get off the exit and follow the blue H signs….   The road is blocked off for construction……. Nightime Paving.   Jen instinctively jumps out of the truck and frantically asks the officer blocking the road, “How are we are supposed to get to the hospital?”.  He orders a construction worker to lead us through the construction zone with his work truck.  Yellow lights blinking everywhere we drove over fresh loose pavement, manhole covers, blew street lights… Slammed the truck in park in front of the ER door and Jen ran her inside as I parked.

I walked into doors of the ER and see a completely packed waiting room.  My heart sank.  Was this the right choice?  It had to be.  They opened the doors right up and took us in moments after that.   I’m still terrified, but know we are safer now that we are in the hospital.  Shayla is progressively getting better.  She’s the hit of the ER.  Telling funny stories.  Using the barf bag as an elephant trunk and encouraging the others around to make elephant sounds with her.  Explaining to the doctor what the stethoscope is and calling it the telescope.  She also asked why they didn’t do the “pressure” thing on her arm; pointing to the blood pressure monitor.    After a couple of hour stay, the doctors prescribed some steroids and released us.

Released us????  Um I’m pretty sure you are supposed to stay and be monitored because as good as she is progressing the Epi will wear off and her toxins are still in her.  Anyway.  We live 3 minutes from our hospital and with that in mind; it was just a waiting game.  Before Shayla was released I went back to get Leighton and we returned to pick up Jen and Shayla.  The truck ride home was just about an hour.  I cried for almost all of it.  Jen sat in the back seat in between the kids car seats.  As per their request she held each of their hands and they passed out for the whole ride.  The only sounds were our sniffles.

We stayed up most of the night watching her sleep in our bed between us.  She kicked me a lot in her sleep.  She sweat ALL night.  Soaking wet sweat.  (A side effect of the Epi Pen)

There WILL be a next time.  And next time I WILL not wait, or hesitate to administer the EpiPen.  And I know Jen will not either.  It brought us the time we needed.  My only regret was not giving it to her 7 minutes earlier when we made the decision that it was in fact, serious.  The Ambulance was also probably the only other regret.  They would have been able to bypass traffic, have oxygen, guide us and watch her.  They say 2 or more symptoms are enough to need to administer.  She was showing 6.  I get it.  We waited longer than we should have.  I hope you see that we did too.  If you have the prescription, don’t be afraid of it.  Be brave, use your head, YOU know best when you should use it. Everyone told us… you will KNOW when it’s right.  Well now we do.  Carry it, use it, then go get the help from there.

Today she is strong as can be.