Botulistic!

So, we have 4 kids.  This is so traumatic to us as parents, that I want to lead in with that.  No, not the botulism thing.  Having 4 kids.  4 is a lot of kids.  

Anyway, there is a story here.  A story of a baby.  And Botulism. And California Chicken Cafe.

The Story goes like this-

Last Thursday, July 25

I have California Chicken Cafe for Lunch.

Heather was noticing that Josiah was being fussy.  Not his usual demeanor.  He is usually a super mellow baby.  At least compared to Rose and Liam.  As the day goes on, she notices he isn't eating.

It gets to the point where she (leave now if you are squeamish, you sissies) has to pump her breast milk.  You can't just fill up a water balloon forever, can you?  Same principle exactly.  It's just science, you guys.

She pumps up all her business, and goes to bed.  

Friday, July 26

I go to work.  Heather is hanging out at her moms (oh yeah, we are at her moms in the valley the day before too.)  She has a play date scheduled for later that day.  She text messages me that she is canceling the play date, she feels like she needs to take Josiah to the doctor.  He is "really lethargic" and not eating.  She makes an appointment for 2pm with the pediatrician.

I have California Chicken Cafe for lunch. 1/4 chicken, broccoli pasta, cabbage salad. 

The day goes on, and I get a phone call at 2pm.  The pediatrician took one look (or two, I wasn't there to count) and says he is super dehydrated, and Heather needs to take him immediately to the ER.  Thankfully the ER is in the same complex, so she just walks across the parking lot.  Heather sounds pretty shaken up.  I bail on work, and head straight over.

When I get to the ER, Paula (mom in law) is sitting with Amalia, Liam and Rose in the waiting room, and Heather and Josiah are already being seen.  Paula, thankfully, works just around the corner, which is why she was able to beat me there.  I sit with them for a while, trying desperately to get our kids to act normal.  the ER waiting room is full on ancient people in white robes sitting in wheel-chairs.  "Why is that lady in her pajama's?"  Liam belts out.  "Grandma and Grandpa!" he yells later when an elderly couple walk in…

Anyway, Paula says "you can probably go in there".  Duh.  Didn't think of that.  I go in, Heather is in a little room.  Little dude is on the bed, looking so small.  He has an IV drip hooked up.  A few doctors look at him.  It takes a while.  They think he just got some sort of bug (no fever) and for whatever reason, didn't want to eat.  Kids that young can get dehydrated SUPER FAST, so that is why he was pretty knocked out.  They said that after some time on the IV drip, he should be properly hydrated, and bounce right back.  BUT!  They want to do a lumbar tap to rule out meningitis.  Heather gets upset, I don't.  Because I don't know what a lumbar tap is.  Heather tells me "Its a spinal!"  I immediately connect "spinal" and "meningitis" in my mind, and get a little freaked out.  They do the lumbar tap, (they kicked us out of the room for it, thankfully) and we go back in.  Pretty quickly, they say the spinal looked good, so they just wanted to admit him overnight to get him hydrated.

I send Paula back to her house with the kids, then follow to get some clothes and stuff for Heather, since she will be at the hospital overnight.  I end up sending Paula back with dinner and the clothes, and I have kids watch that night at Paula's.  

Saturday, July 27

Things I found out later:

Heather is up some of the night with Josiah, holding him.  He is flopping around like a limp doll, and she is praying to God that he doesn't die.  She has no idea what is going on, but she knows he doesn't seem right.  A nurse checks him out early that AM, and Heather said the nurse looked FREAKED OUT.  Not a great way to calm the mom down, nursey nurse, but damage is done.  Heather is freaking out. A Doctor (officially doctor # 3 to see him at that point) says he needs to go to the PICU (pediatric intensive care unit) right away.  

She calls me, its about 9am Saturday.  I bail on Paula and the kids and jam on over to the hospital.  

When I get there, the doctor says "oh, are you the dad?" And follows me into his room.   

She is, per the nurses "the best doctor at the entire facility", which I won't disagree with.

But that is what makes the next exchange that more more unsettling.

"I think Josiah MIGHT have Botulism, but I'm NOT SURE.  I'm STILL THINKING ABOUT IT."  Emphasis mine.  So, she basically is googling it?  She doesn't say "i need to get a second opinion" or "I'm waiting for a test result".  She just says she wants to think about it.

Okaaaay…… Should we draw straws, or flip a coin?  Tea leaves?  I would like to know more about your process.  What are you thinking about exactly. 

Detour:

Infant Botulism is super rare.  Less than 100 known cases per year.  Botulism spores are in dirt, and in honey. That is why you can't give your kid honey until they are 1 year old.  After that, the body is strong enough to fight off Botulism…but until then, it can hit them bad.  It blocks the brain from telling the nerves what to do.  Basically, paralyzes.  The body will eventually fight off the disease, but it could take weeks to MONTHS.  In the mean time, the paralysis could cause respiratory failure.  In old timey times, it was a 70% fatal disease, since the baby would stop breathing and die before its body could fight off the botulism.  With the advent of modern medicine, it is rarely fatal.  

Back:

The doctor is "thinking" about it, because the only way to prove for sure that a kid has Botulism is through a test done on a stool sample.  Two problems:  botulism causes constipation, so you can't get stool.  And the test takes 3-5 days to complete, since they have to first do whatever sciency thing they need to do to the poop, then they need to inject it into a live mice to see if the mouse gets botulism. Craaaazy.  

BUT!  there is some new drug called Baby BIG, and it is really helpful in treating Botulism.  It used to be that they would just keep the baby alive long enough for the body to fight it, but Baby BIG, if given early enough, can actually stop the paralysis from getting worse and reverse the trend QUICKLY.  Days, instead of weeks.  However, the drug is $45,300 for ONE DOSE.

And, the people that control the drug won't give it out until the hospital has agreed up front to pay for it, regardless of what happens with the insurance company.  

So, the hospital isn't going to stick their necks out for something that expensive until they are SURE it is Botulism.  But the only way to be sure, is to wait.

What to do?  that is why the doctor was really thinking about it.  

they ended up sending a bunch of other doctors to look at him, a neurologist, a doctor of rare diseases, and some guy with really nice Jessie Katsopolis hair.  They all agreed that the only thing that causes paralysis acutely like this in a baby is Botulism.  So they all basically made this argument to get the drug for him.

The doctors had to fill out a ton of paper work on this, since the Botulism Center for Whatever (HDQ in Los Angeles, by the grace of GOD) can also agree that:  yes, he has Botulism, here is your super expensive medicine.  

So, around 5pm, they get the paperwork filled out, and sent over to Botulismville, and they approve the drug.  It is couriered from LA to here.  yay!  It has to go to the Pharmacy to be reconstituted.  Then there are super specific instructions for how it is administered.  Something like .5CC per Kilo of Josiah's body weight, per hour, but half that for the first 15 minutes.  Not that I am a nerd and pay attention to those types of things.

So, Saturday ends with him totally a floppy mess, with an IV drip, and getting his $45k Baby BIG.

Oh, we had Sharky's for lunch.  I don't remember what dinner was.  My mom drove down from The FP (not the movie) and took the other 3 kids.  We are starting to get the sense that it could be a long visit.  

Sunday July 28th

they put him on a breathing machine. Intubate?  I guess.  I'm not checking Wikipedia to verify.  Its pathetic, he has every machine ever known to the the history of medicine hooked up to him.  We have California Chicken Cafe for lunch.  I have to talk to the Center for Botulism Incorporated of Whatever (CBIW) and answer some questions.  They really want to track the disease.

OH!  So, another kid is in the same PICU, and the nurse tells us (violating the Hippocratic Oath?) that the other baby ALSO has Botulism.  As of Sunday, there were 3 known cases of infant Botulism in the ENTIRE WORLD, and 2 of the where in this same ER.  The other was in Norway.  

So, ground zero for an outbreak?  TBD.  Keep you posted.

Monday-Thursday:

Pretty much sameosaurus.  We definitely have Calfornia Chicken Cafe at least 3 more times.  One day it was all I ate.

He got a PICC line, its a supercharged IV that goes to his heart.  Sounds terrifying, but they said it wasn't.  okaaaaaay.

Josiah is still on the ventilator, but they did get the test results back that confirmed he has botulism.  The doctor was all super smiley, and we all gave each other the weirdest high-fives ever.

Shout outs:

Melissa for hanging and gang-banging, plus the hostess treats.

Jeremy for the california chicken cafe

Becky for visiting 

Mom and dad for taking the other kiddos

Paula for letting us live at her house and visiting

and all the other people that have reached out for support.  

Other than the fact that eating out is expensive, and it stinks to have to keep buying take-out menus, we are doing well.  Heather is mostly here, but I have been giving her breaks so she can go shower, get out a bit, etc.  He might be another 2-3 weeks here, but that is apparently normal and not something we should worry about.

Had to cancel family vacation to Mammoth, but life goes on.

Um…what else?

Oh, the doctors said we were model parents, and were surprised and how well we were taking things.  Its because we understand that God is Sovereign, in control of all things, and ultimately Josiah is in His hands.  Do  I think Josiah will get better?  Yes.  But his life is Gods to do with as God sees best, and we humbly submit to that.  Did you know that in your life you will have to submit either to sins overpowering influence on your life, or to God through his son Jesus?  So, either way you will be a slave to something.  But slavery to God is actually having the perfect Master that works all things out for His good and Glory, and HE is what is best for us.

Is that confusing?  Lets talk!  Disagree?  Lets talk!  Think its not a serious issue that really requires a response from you?  Lets talk!  Don't believe in God?  Let's talk!

We can meet at the nearest California Chicken Cafe for good food and important conversations.

editorial note:  I didn't proof read or edit this at all, so sorry for any repeats, spelling, awkwardness, etc.