Wednesday, October 8, 2014

My Kingdom For An Epi-Pen...~WAGR Wednesday

Emerald Bay on Lake Tahoe
The never ending excitement of having a child with a rare disease...

Most of the time, in spite of all of Evie's numerous diagnoses, we live a tranquil life.  However, on Thursday of last week, we experienced another "bump in the road."  

I got a message on my phone from Jeff saying that Evie had been stung by a bee at school.  He said he was going to take Benedryl over to the school.  I suggested he get the non-drowsy since we'd never really had an issue with bee stings, so a major dose was probably over-kill. 

As it turned out, that was everything EXCEPT for over-kill.  When Jeff was still on his way there, he got a voice mail from school saying that they were going to administer the Epi-pen because Evie was swelling dramatically and turning blotchy red and white. 

Evie has been stung by bees before, and we have never seen an allergic reaction.  This time, however, had the nurse at school not made the decision to administer epinephrine, I shudder to think of what I would be sitting here writing right now.  

It was our first trip to the ER here in Nevada.  Evie was transported by ambulance to the hospital, and I met her and Jeff there.  Evie, in her character said upon my arrival..."I have a question for you...for ALL of you..."  We paused and awaited this important, tear-filled question:  "Can I still give my book talk tomorrow at school?" 

Tough.as.nails, these kids with WAGR are. 

After being released from the ER, we dropped off our Epi-Pen RX at Walmart and headed to get some frozen yogurt while the meds were being filled.  I then drove Jeff and Evie back to school as Jeff's car was there (he had ridden in the ambulance with Evie to the ER.)  

When I returned to Walmart to pick up the RXs, I was told that they couldn't fill the Epi-Pen RX as it was written for a Junior Epi-Pen and Evie needed an adult due to weight.  When I said, "Well, there must be something we can do" the pharmacist told me that they had already called the doctor and he had left for the day and we'd have to wait for him to call back.  

Here's me...

"I just found out that my daughter has a life threatening allergy...I will NOT leave this store until I have an Epi-Pen in my hand."

"What do you expect us to do?" 

"There IS a way to get around this.  I'm certain that the doctors and nurses who observed Evie today would NOT want us to be without an Epi-Pen.  What number did you call?  I will call them and get this cleared up."

The pharmacist, pursed lips, doubtfully furrowed eye brows, turned the computer screen to show me the ER's phone number.  

I called and explained who I was and what I needed.  The receptionist informed me that I could call another number, which she gave me, and ask for an ER doctor to re-write the RX.  I then gave the pharmacist tech the new number and he called and got the re-write taken care of.  About 30 minutes later, I was on my way home with our precious Epi-Pen.

In all the things that we have been through; cancer, heart surgery, recurrent infections...I don't know that we have ever been at the precipice of a life-threatening situation such as this.  Had our WONDERFUL school nurse NOT administered the Epi-Pen...I quail at the thought. 

Did you know that the epinephrine administered through the pen is done so to prevent the HEART FROM STOPPING, and to keep the blood pumping to all parts fo the body.  I didn't realize how disastrous an allergic reaction could be.  Her HEART could have STOPPED.  This wasn't just a throat swelling, or eyes puffing up, or an itchy rash.  This was her HEART!.

So, I have learned many things from this experience, and one of them is to NEVER MAKE LIGHT of an allergy...the other is SCHOOL NURSES are LIFESAVERS...and finally GOD HAD US IN THE RIGHT PLACE AT THE RIGHT TIME.  

What would have happened if Evie had been stung when she was just with our family and we didn't KNOW she had this allergy?  What would have happened if she would have been on a field trip?  What would have happened?  What would have happened?  We were in good hands (in my life, I'd say we were in God's hands), and we are thankful to be enjoying the week we are just one week after such a harrowing experience. 

...and finally, I will not go ANYWHERE without our Epi-Pen...

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