Emma-Bug

Oh this is FUN!!

"WASHINGTON - The U.S. Food and Drug Administration said Thursday it was reviewing the safety of triclosan, a widely used antibacterial agent found in soap, toothpaste and a range of other consumer products.

Despite the fact that this chemical is found in everything from soaps to socks, there are many troubling questions about triclosan's effectiveness and potentially harmful effects, especially for children.

The FDA noted that there was no evidence that triclosan could be harmful to people but noted that an animal study showed the chemical may alter hormone regulation and several other lab studies showed that bacteria may be able to evolve resistance to triclosan in a way that can help them also resist antibiotics.

Many experts agree that soap containing triclosan does little or nothing extra to remove bacteria that using soap without the ingredient, as washing the hands physically removes the excess bacteria."

That is AWESOME! Isn't that awesome?

It doesn't add anything! It may make you sick! Cool.

How long ago was it that they found parabens in breast cancer tissue and said "hey, come on, just because we found them accumulated in cancer tissue doesn't mean there's anything WRONG with parabens!" Anyone notice a reduction in paraben use by manufacturers yet?

And I just have to get this off my chest because it's been bothering me for so long! Since I work in a "boys club" I have often overheard the comment that girls during "my day" didn't have breasts like they do now....."must be prenatal vitamins"...and I just want to punch these particular gentlemen in the nuts. ARE YOU KIDDING ME? Vitamins? Now it's been a while admittedly, but last I remember, you know when we all had to read books and stuff for school, I think I recall learning hormones would be what initiate growth in breasts, you know? not folic acid! So the idea that a vitamin, no matter how mighty that vitamin may be, is not going to make boobies grow. I know everyone who is reading this knows why the cleavage, it is mighter now... ladies, say it with me...the hormone overload is because our meat, cheese and milk that are being served up for us. We ingest that shit by the gross. And as someone with Stage IV endo and the subsequent wonked out hormone parade, I'd just like to say....Fuck You FDA.

I'd also like to put in my vote for notification relating to foods that are using genetically engineered ingredients. Did you know we're the only civilized country in the world who is not required to notify consumers a product contains genetically modified ingredients? Does anyone else get the skeevies over the term "genetically modified"? Zombie food. "Genetic engineering uses material from organisms that have never been part of the human food supply to change the fundamental nature of the food we eat". Good God. "Genetic engineering can cause unexpected mutations in an organism, which can create new and higher levels of toxins in foods." And this one... this one is my favorite "37 people died, 1500 were partially paralyzed, and 5000 more were temporarily disabled by a syndrome that was finally linked to tryptophan made by genetically-engineered bacteria."  Neat! I'll have seconds please?! 

God but I hate the FDA, those lobbyist driven, political pawn, for profit, pieces of shit. I'm always just curfubbled when I think of an organization created to act as a safety measure for the masses and ends up working for the bottom line buck without nary an IOTA of thought to what they're doing to the people they're supposed to be protecting.

Be wary.

 

 

 

 

It's over, thank GOD. She's safe at home and considering its only been 24-hours since her surgery, she's doing remarkably well.  The kid is tough.

The surgery was over about 10:00a. It took an hour, I was sure in that time I would have a heart attack, it was just POUNDING in my chest. I was nauseated, sweating and basically not the strong mommy I wanted to be. I paced, I fidgeted. It was ugly. Poor Mark, dealing with his own fears and anxiety had to talk me down several times. I was so worried...

And then they called from the OR about 30-minutes in and I swear my heart sank to my toes, I was going to have a stroke right then and there in the waiting room. Even the nice volunteer assigned to take care of us in the waiting room looked at me startled. Apparently the color left me rapidly as I picked up the phone...

So yeah. Not the strong mommy I wanted to be.

...It turned out they were just confirming we wanted the tube in her ear, which had long ago fallen out and was just squatting, to be removed? "um, yes". DON'T EVER DO THAT AGAIN OHMYGOD.  I could hear beeping and strange whooshing noises in the background. My baby. My baby was hooked up to machines that were making those noises. 

God, even now, thinking about those noises...

Her doctor came out 6 months or so after she went in and sat down next to us. She had done perfectly, no complications. Her tonsils were easy to remove and showed signs of past infections. He felt good that this may help with her fevers. Someone would come out in a minute and take us back to recovery...

I know this sounds strange but that was the exact moment the weight of the world was removed from my shoulders. I could deal with whatever was going to happen, no matter how badly she felt, the surgery was over. All that emotion, all the fear I had harbored inside me  just poured out.

...He said he had a present for me and produced a plastic cup with a lid. Ok, I'll admit it I thought for a moment he was handing me her tonsils! It was just the tiny plastic tube from her ear. YES, let's fuck with Stephanie's fragile and exhausted mind. Fun! He laughed, I laughed, Mark laughed and I think it was the first time we laughed all week. It felt good.

Two nurses appeared and said only one of us could go back. I was a mess and I knew Emma needed strength so I asked Mark to go.  The nurses said they didn't see many daddy's in Recovery and I found that so odd and sad. "She's my girl" he said proudly. And she is...

He thanked me later for that, for being the one to go back. I think the importance of daddy's are sometimes underrated.

...When I was allowed to go back they warned me she was crying. I thought "No shit? I would imagine so", plus if y'all remember the surgery for her tubes, the fight or flight reaction, yeah I wasn't surprised. But she wasn't like that, just clearly woozy and scared from the anesthesia. Her face was puffy and she was laying on Mark's chest.

They wheeled them to the 3rd floor, me following along side of the gurney. The nurse said she had asked for a popsicle almost immediately after coming out of her haze. THAT'S MY GIRL, SET HER UP! And they did, 3 popsicles and iced water. She ate two of them and drank the water. A nurse came in and started asking questions like how old she was, she tried to hold her hand up that had the IV and spread her little fingers, no go. She switched hands and held up 4 fingers. The nurse laughed and said "I think everything's fine here!" and left.

Once we were alone we - without much thought- bombarded Emma with questions, "Do you want more popsicle? More water? Do you need a tissue? Does it hurt?...." and she finally yelped "STOP TALKING!"  Have I mentioned how much we love her? Spunky Monkey.

Within an hour they told us we could leave. She was eating and drinking, she was coherent, "Would you like to go?" OH HELL YES! So we left, even taking the surgical gown with us. Hey she didn't want to jack with changing clothes.

The nurses were amazing. The doctor was amazing. The anesthician - she was incredible. I feel so lucky to have had such a team. Every person in that hospital was genuinely kind. We're very grateful.

So she's eating and drinking and generally doing really well. We're cautiously optimistic going forward. This has been a long road and we've dealt with a lot of ups and downs. Only time will tell now. But hope is there.

Thank you all so much. Thank you. Every word you wrote helped. Every single one. Thank you.

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...