Wednesday, August 29, 2012

In The Woods

This is my beautiful son.

And his gorgeous brown skin.

One of the most loved little brother's in all of history.  I want him to have that skin back with everything in me.

The pictures in the last post are not those of a yeast rash as he was diagnosed.  It took a trip to the ER, 6 IV attempts, 2 spinal taps, multiple blood draws, and a urine sample via catheter to find that out.  

It's actually staph scalded skin.

Bacteria in his little body is growing and shedding toxins that are literally burning the skin off his frame.

After 5 days and 4 nights in the hospital, things looked to be under control.  The staph was dying off as a result of the strong IV antibiotics.

 Skin treatments ensued as we attempted to get his skin to heal and regenerate.

 He began to heal, and not be in pain for the first time in weeks.  We got to see his sweet smile and hear his coos and first attempts at making real noises. 

On the 5th day there they sent us home.  We joyfully packed our bags, picked up his prescription he would be on for the next 2 weeks, and rejoiced to be done with the pain and anguish that accompanied our time there.  We had the most incredible staff of nurses and doctors and were so well cared for, but hospitals are just not a fun place to be.

His first 2-3 days home went well.  He seemed to still be happy.  We were attempting to get him used to life back at home.  We thought we were out of the woods.

Then things started to get bad again.  His skin is showing signs of redness and peeling in areas where it was previously healed.  His demeanor is returning to one that shows us he is in pain.  His ability to sleep is diminishing.  All signs that the staph is still alive and well in his body.

We had a follow-up appointment yesterday and the doctors were not pleased.  They started him on another antibiotic in fear that the staph he has is becoming antibiotic resistant.  He has 24-48 hours from starting that to show improvement or we will be readmitted.  We just hit the 24 hour mark and while he is acting slightly more comfortable, he's not looking or sleeping any better.  We've been instructed to wait it out until tomorrow at his follow-up so they can reevaluate.  We've been told to come with our bags packed though if things don't look better.

If the staph migrates to his blood we will be in the ER though and then most likely the PICU.  We have to watch him very carefully for fever because that would be the first sign.   Thus the reason he is on no pain medication right now.

For now he's resting.  And we are mentally and emotionally preparing ourselves to be back in the hospital.  We greatly appreciate all the offers for help, shows of support, and prayers for our little fighter.

Update:  He is being hospitalized again.  The doctors are unsure why his skin in continuing to be red and not heal.  He is having an entire battery of tests run to try to get to the bottom of it.

Thursday, August 16, 2012

The Last Few Weeks With Babyham

 Part 1 (I started this post a week ago, but life is cray-cray around here so it didn't get finished):

God, in his mercy, helps you forget what life is like with a newborn once you are out of that stage.  And then while you wait for your precious little bundle, you envision yourself rocking and snuggling, nursing and laying them down to sleep.  Cute, darling little babes. 

When the reality is thrust back upon you, it's a bit jarring.  Particularly when you have been graced with what is often labeled a "high needs baby".  In other words, a baby who has decided you never get to sleep ever again.  Ever. 

This is our world right now. 

He sleeps, kind of.  He hates life from about 5 p.m. until somewhere between 10:30 and midnight.  Lots of screaming and over exhaustion, but no real sleeping.  Forget about laying him down during this time.  Not gonna happen.  Then for the remainder of the night he sleeps in somewhere around 1 hour chunks interrupted by bouts of screaming and a little eating.  If you try to lay him down during the night you have decided to make your life miserable.  Moments after being laid down he will start to fuss before breaking out in a full blown scream.  No good mama.

This was starting to improve, maybe, a little bit.  But then the rash happened. 

It seemed to come out of nowhere, he woke up one morning with a bad diaper rash.  My attempts to alleviate it all day didn't seem to improve anything.  Then after a few days it spread.  It was no longer just a diaper rash, it was on his cheeks and neck rolls, and then finally on the back of his head in his hair.  It's raw and painful and looks pretty awful.  If you touch it he screams. 

So now our days are filled with cleaning wounds, constant diaper changes to keep it dry (day and night), applying prescription creams and lotions, and trying to keep it from spreading. 

It's far from enjoyable and makes spending time enjoying our son hard.  And while suffering is an expected part of life, it's hard to embrace and accept it. 

Part 2 :

He's slooooowly healing.  His face is mostly healed, his neck is getting there, and his diaper area is pretty good.  But it's also spread some to his legs, arms and back.  So there's that.  Boo.  We've moved beyond the prescription cream to a prescription oral med to try to fight it off. 

Sleep is somewhat improved.  He was only up 4-5 times last night and spent most of the night in the co-sleeper instead of on me.  So odd to see that as success and improvement, but such is life right now. 

I'm going to attach some photos of the rash below, but if you're squeamish or icked out my medical stuff, you may just want to click the "X" now.

They're all iPhone photos, so not the best photo quality.  But really, you don't want quality pics of this.  

I warned you.


Wednesday, August 8, 2012

Annabelle: 2

 A post by our little Annie as she turns 2. 

"Mommy couch sit me."

"Mommy love you me."

"Sing Twinkle Twinkle."


"Go buh-by Costco?"


"NO!  Annie do it."

"Where sheepy?  Sheepy go too."

My sweet pumpkin you are growing and changing faster than I thought you would. 

You have willingly vacated the role of baby in the house and enthusiastically embraced toddlerhood with all it's independence, laughter, learning, willful defiance, and tantrums. 

You love to sing, watch movies, play with your sister, beat up on your sister, and pick out your own clothes. 

Your most recent accomplishments include being diaper free when awake, successfully consuming nothing but carbohydrates in a day, independently singing your ABC's and Twinkle Twinkle Little Star, and driving your mother to the brink of insanity and back with your antics. 

I'm so thankful I get to be your mommy.  Your sweet smile and the way you run to me shouting mommy when I get up each day are some of the highlights of life.  We'll ride out this thing called the terrible 2's together and be better for it in the end.