The surgery is scheduled for, are you ready for this, 6:30a on Tuesday morning. Why 6:30a? That's a fine question. It seems a little inhuman to me as well. Perhaps if they start at the ass crack of dawn they can squuuuuueeeeeze in a few more patients, rack up another couple of thousand for their effort. Let us not forget it is a business.

Emma, my independent, about to make me lose my mind with her hair flipping and attitude daughter, never got over those bouts with fevers. Was the fact she tested positive for strep a fluke? Yes, and quite apparently, no. She did have strep. It's gone now. The fevers never went away. Ok, YES, they are much less severe, no 106 spikes. That's a bonus. But they were there, every 28 days. There and there, and oh hey, there again for 13 months now.

We saw specialists, we had tests. And I mean TESTS. Our insurance statement, it came not in an envelope, not in a manila envelope, but in a box. A fucking box. There have been so many tests.

The fevers kept coming back.

The pediatrician told us it wasn't unusual for a child to contract up to 12 viral infections a year. I said bullshit. Unless this was the grand fucking poobah of coincidences, this girl wasn't contracting a virus ever 4 weeks like clockwork. Like the day I start my period is the day she gets her fever. Don't you find that ODD? Virus my ass. 

So I did what every pissed off mother does, I documented that shit out of everything, including a detailed calendar. Listing carefully the date and time when her fevers started, what they ran, when they ended. I spent days, hours upon countless hours on the internet researching mysterious recurring fevers.

Someone was going to listen to me.

PFAPA, Pediatric Fever Syndrome, Periodic Fever Syndrome, Recurrent Fever Syndrome. I was sure of it. Every study, every test case, every paper, article, opinion, they all pointed towards Emma. The exact same symptoms, exactly. Even down to her sleep apnea.

Nobody listened. "No, it's so RARE. And there are no TESTS for PFAPA, I'm sure it's simply a virus".

NOT a virus. I felt it. But I knew...KNOW something is wrong with my daughter. Why isn't anybody FUCKING HELPING US?

And every month, when the fever came back...we would watch our daughter suffer AGAIN. She's known so MUCH in her short life...it was like having our hearts ripped from our chest. There was absolutely nothing we could do.

And then something miraculous happened.  My pediatrician retired and her practice was taken over by someone new. Someone young. Someone who would listen to me.

And it began, within 3 fever cycles, after looking at the tests and the other tests, and did you know we had those tests done too?...she diagnosed Emma with PFAPA.  She had seen it before. She was sure.

And in those moments, after the months of frustration and anger and sadness and guilt, I heard what I had known for so long. We were finally going to be able to move forward, take the next step, attempt to give our daughter a normal goddamn childhood.

This "syndrome", which was named in 1986, has no cure. There are treatments, such as injecting steroids each time a fever appears. Though the research shows limited success. Not to mention that's an assload of steroids with an average run time of 4.1 years.  Somewhere around 2005 someone, some brilliant person, happened to notice that in children who had this syndrome, when their tonsils were taken out, the fevers ... disappeared. Eureka!

Of course anyone who knows the medical field knows the "experimental" treatments stay experimental for years and only become mainstream when results are consistent time and time again. That wasn't going to happen with this. Studies vary with success rates, anywhere from 65% to 99%. But you see I don't believe we're all cookie cutter people and I believe that some treatments work wonderfully for some and lousy for others. I've experienced it myself with my own ailments. This variance, it didn't diminish my hope. There's a chance here! A chance for my girl to NOT GET SICK!

So the search began for an ENT who was not only familiar with PFAPA but was familiar with the relatively new research. After all, there is nothing, technically, wrong with Emma's tonsils. We needed a doctor who could fudge the system a bit and perform the surgery based on the HOPE it would work.

We found one. Not a newly graduated, young doctor who's up on his research. But a gentle, 60-year old, ex-military, board certified, SWEET JESUS AM I THANKFUL FOR YOU surgeon.

The first words out of his mouth were, "We don't know why this works, but it seems to. It's not a guarantee, but it sounds like your daughter has been through enough. Let's talk about surgery".

Can you imagine what that's like? After 13 months and oncologists and hematologists and infectious disease specialists...of holding your daughter on your lap while they take vial after vial of blood as she screams and gasps in fear. After singing to her so she'll hold still in the cat scan machine...of sleepless nights and endless worry. Of panic attacks and fear so acute you literally cease to function...can you imagine what those words meant?

So the surgery was scheduled. Next Tuesday at 6:30a. And I have hope for the first time in a very, very long time that maybe...

Comments

[Jacquie]

Here's hoping with you.....

[Johnny]

An early slot is good.

It means:

a) she can't get bumped
b) she won't have food in her stomach
c) she and you have the whole day of daylight in which to watch her recover and make decisions (having to make a decision at 11:00 pm sucks)

[Susan]

I've got a bag full 'o stuff to toss your way: Good thoughts, ju-ju, fairy dust, well-wishes...Pick the one(s) you need and/or want and it's yours.

Lots of hugs from Chateau L.

[Lee]

I'm with Johnny on the time, late morning is a load of trouble with small kids who are famished. I hope beyond hope that this is an answer for you and sweet Emma.

[Journeywoman]

Thinking good things for you and emma.

[carosgram]

So glad you are finally being listened to! Thinking of you and wishing you the best

[Diana]

What a nightmare you've all been living. We'll all keep up the hope that this surgery will stop the fevers. I'm glad you were so persistent.

[k2]

I agree with Johnny, early is good.

Pediatric surgery patients are scheduled by age with the youngest going first. A 6:30 a.m. surgery means that you have the first or second surgical slot that day. The surgeon and anesthesiologist will be fresh, as will the recovery nurse(s). This is all very good.

I'm so glad you finally found a good, empathetic surgeon. I'll keep you all in my thoughts on Tuesday.

[Kate]

Gosh, good for you for being so insistent. I can't even imagine. I hope the surgery works!

[kris]

YES! i'm pounding my fists on my formica!!! and you will be SO glad surgery is first thing woman- have you dealt with a 4 year old who is denied food and drink all day? i have. NO FUN. sucks to get up that early, but it is a dream not to deal with the hunger meltdowns- plus it's over early and you can then breathe for the rest of the day.

good thoughts... ALL good thoughts that this brings the miracle fever cure.