Josiah Update Part 3

Just a quick update for all y'all playa's.

Josiah is doing much better.  He is off the ventilator.  This time it was planned.  So thats nice.  

He is no longer on the vapor-therm, which was like the nasal doohickey that you see people who carry oxygen around with them wearing.  You know, the plastic tubes that loop over the back of the ears?

The doctor told me today that they hope to take his central line out tomorrow.  Keeping it in too long carries a risk of infection, and Josiah is doing great, so he is not on any antibiotics right now.

He will "take the breast" tomorrow.  But only for a few minutes.  Go Josiah, go!  If he does well, the feeding tube can come out in a few days…And I think that means we can go HOME!  

Poop-pocalypse

So…I was siting at the hospital with Josiah on Sunday, and Barrie (the nurse) said she wanted to change Josiah's diaper, but he was too peaceful, so she was going to wait.  An hour later, she pulled his blanket back, and her life flashed before her eyes.  Poop was coming out of every possible escape point.  The diaper was no defense against this poop onslaught.  so Barrie starts scrambling, and before you know it, there are FOUR NURSES assisting in this diaper change.  Once the diaper was peeled back, it became evident that Josiah pooped out alien vomit.  It was SLIMY.  Like, poop boogers.  And there was ALOT.  Like an entire jar of spoiled peanut butter was squirted into his diaper. 

 Get this.  THEY CUT HIS CLOTHES OFF.  We're talking serious.

They had to change his central line, sheets, bedding…everything.  No way comparison, this was the worst diaper in the history of ever.

Nurses and Providence

This is seriously the best hospital.  I will fight anyone that disagrees.  The nurses and doctors are so sweet.  It will be sad to leave, in a way.  (But we're not staying.)

If your kid ever gets infant botulism, ask for Val, Jamie, Rosie, and Barrie.  Tell them Brad sent you.  You'll get the mad hook up.

Heather Newbold, who can find?

Proverbs chapter 31 is well known for its description of a worthy woman.  There are many books, bible studies, ministries, and aids that use Proverbs 31 as a way to give biblical instruction to women.  What better way to instruct a Christian woman than with this biblical example?  You know what else Proverbs 31 is?  A description of my wonderful Heather.
21 verses from God on the model of an excellent woman, and 21 examples from me on how Heather is my excellent, worthy wife.

Description of a Worthy Woman

¹⁰ An excellent wife, who can find?
For her worth is far above jewels.

I love her so much.  On our second date, I said "I love you and want to marry you."

She replied: "you're cute"
¹¹ The heart of her husband trusts in her,
And he will have no lack of gain.

Heather is the best thing about me.  This isn't hard to believe, if you have ever met both of us.  It's not uncommon for me to hear "How does Heather put up with you?"  I know how much better my life is because of her.
¹² She does him good and not evil
All the days of her life.

Heather really does serve our family.  She does what is best for our family, and graciously allows me to lead.
¹³ She looks for wool and flax
And works with her hands in delight.

True story.  she makes me take flax seed pills, (since I am allergic to fish and need Omega 3…)and she was the one who told me how great wool socks are.  She literally looks for wool and flax.
¹⁴ She is like merchant ships;
She brings her food from afar.

She drives from Frazier Park to THREE different grocery stores in Santa Clarita to bring us food.
¹⁵ She rises also while it is still night
And gives food to her household

When I worked nights at Chili's, sometimes she would wake up at 1:30am to make me dinner when I got home.  Quesadillas.  Boom.
And portions to her maidens.
¹⁶ She considers a field and buys it;
From her earnings she plants a vineyard.

She planted a garden, and bought many of the seeds and tools necessary out of her own savings account.
¹⁷ She girds herself with strength
And makes her arms strong.

Sometimes I have to ask her to help me open a jar.  (But I loosened it!!!)
¹⁸ She senses that her gain is good;
Her lamp does not go out at night.

She keeps a hall light on for the kids, listens to the baby monitor, and is always there for them in the middle of the night.  Also, she is a light sleeper.  

¹⁹ She stretches out her hands to the distaff,
And her hands grasp the spindle.

She is sitting in the PICU right now knitting Josiah a cap and booties.  (This verse is about sewing and spindling.  I had to look up commentary on it…)
²⁰ She extends her hand to the poor,
And she stretches out her hands to the needy.

She always contributes to our church's food bank, toy drive, and other charities.
²¹ She is not afraid of the snow for her household,
For all her household are clothed with scarlet.

She had to get out of the car, in the dark, stuck on our road, in a blizzard, with 2 feet of snow on the ground, with Liam and Amalia in the car, to put chains on, so she could dig herself out.  She was 8.5 months pregnant.  She is NOT AFRAID of the snow.
²² She makes coverings for herself

She has made her own clothes.  She even bought "how to sew" DVD's by some Amish people.  Not sure how Amish people have DVD's of anything, but I saw them with my own eyes.

Her clothing is fine linen and purple.

²³ Her husband is known in the gates,
When he sits among the elders of the land.

I am very super famous.
²⁴ She makes linen garments and sells them,

She makes purses and baby blankets and sells them.
And supplies belts to the tradesmen.
²⁵ Strength and dignity are her clothing,
And she smiles at the future.

Heather trusts in God.  She does not worry about the future.  And she talks me off the ledge when I do.
²⁶ She opens her mouth in wisdom,
And the teaching of kindness is on her tongue.

She home schools our children.  She is always giving them gentle instruction, and urging them to use kind words.  (and we are convinced that one day they will actually start listening.)
²⁷ She looks well to the ways of her household,
And does not eat the bread of idleness.

Heather is such a hard worker.  She rarely takes time for herself, and its often that she will stay up late (anything past 9 is late to me…) to clean, do chores, or prepare home-school for the following day.
²⁸ Her children rise up and bless her;

Liam always says "Mom, your beautiful!"
Her husband also, and he praises her, saying:

²⁹ “Many daughters have done nobly,
But you excel them all.”

I don't do this nearly enough.  She is a worthy wife, and excellent in many ways.  She should have a husband excited to praise her worth!  Oh Lord, help me not to be such an idiot!
³⁰ Charm is deceitful and beauty is vain,
But a woman who fears the Lord, she shall be praised.

Heather loves Jesus.  She knows she is a sinner saved by God's grace, and she truly fears The Lord.
³¹ Give her the product of her hands,

And let her works praise her in the gates.

The works of her hands do indeed sing her praises.  Our wonderful home, our beautiful children, and the fruits of her labor are all evidence of her hard work and faithfulness.  Thank you Lord for blessing me with such a wonderful, worthy, Proverbs 31 wife!

Self-Extubation and Val

So, here is a quick update on Josiah, with some pictures.

He has slowly gotten stronger and stronger, so today, he decided to pull out his breathing tube.  He self-extubated.  He is a real self-motivated kind of person.

stud laying low after a long day.  

Play by play:

I got to the hospital about 11.  Heather and I caught up, and she left around 12 to go visit the other three (THREE?!?) kids at her moms.  I brought laptop and a bunch of stuff, catch up on work, etc.

About 12:30, the respiratory therapist and the nurse (Val) were doing stuff.  Doing stuff meant pounding on his chest to help clear up mucus, etc.  I got up to watch a little more closely, since I could see he was starting to pull on various things.

I saw him curl his devilish little fingers around a small tube that was going into his nose.  This small tube had a blue cap on it.  I believe it is the tube that they use to occasionally flush saline down his throat to help with mucus build up.  This tube feeds into the larger breathing tube.  

I said to Val "Oh, he has his hands on that tube" and I reached to grab it.  Before that could happen, he pulled it out.  The larger tube and the smaller tube came out of his nose.  The larger tube had a 2-4" long white tube on its end.  Apparently, that is what was helping him breathe.

I said "Oh!  He pulled something out!"

Val said "it's okay" and then called for another nurse.  By the tone in her voice, I guess everyone knew what was up, because Dr Lee and two other nurses came running in.  I quickly moved out of the way, standing by the door.  Dr Lee said "He self-extubated?"  And then everyone knew the game was on.

Val told the respiratory therapist "grab the bag!"  And then the chick didn't, so she said it again, a little more firmly "grab the BAG."  Val gets stuff done.  Don't mess with Val.

So, scramble-ayah, everyone doing stuff.  Some nurse said "how's Dad?"  But since she didn't ask me directly, I didn't answer.  

They grabbed a new tube so they could quickly suction, and pulled out his feeding tube as well.  They suctioned a ton of fluid out of his nose and his throat.  The entire time they had him intubated, it was a little less because they were worried about his breathing, and a little more because they didn't think he could manage his airway properly.  (clear his throat, swallow, etc.  Science, you guys.)

Anycrap, they put a breathing bag on him, and he is doing fine.  He never dips in his BPM (breathes per minute) and he handles it like a champ.

The GREAT news is they had SPRINTED him for two hours, just prior.  That meant they basically turned off the functions of the breathing machine to see how he was holding up, and he did great.  So, he pretty much pulled out his breathing tube at the perfect time.  Because he is a baby genius.  (not affiliated with the movie in any way.)

After they all calm down, they see that he is doing fine without it, so the Dr says "well, it isn't the way I would have liked it, but lets see how he handles it."

Josiah likes a challenge.  

At one point, I heard Val and Dr Lee say "I'm pissed that this happened."  "Yeah, me too."  then…"we'll talk about it later."

I'm convinced that Josiah pulled it out himself.  I SAW IT.  But Val is convinced the respiratory therapist got the tube caught on something she was holding, and she pulled it out.  I could tell in the way Val was talking to the respiratory therapist (who is only not named here because I don't know her name) that she was pretty peeved at her.   Pretty sure that is what she wanted to talk to Dr Lee about later.

So, where are we now?  Oh, right.  Josiah is off the breathing tube, and they backed off his sedatives as well.  He is pretty awake, but "drunk", says Val (Val has class).  He may have withdrawals and need some methadone?  No joke.  Val doesn't joke.  Other than that, they just need to suction his throat and mouth a while until he is strong enough to clear it airway on his own.  They don't think they will need to re-intubate him.  So thats nice.

Right after he yanked.  See the tape marks on his face?

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.