Thursday, February 4, 2010

Three Steps Forward, Two Steps Back...

They told us this would be a roller coaster.

They told us it would be touch and go.
They told us it would be hard... and heart wrenching.
We knew there was a likely chance that he could back slide at some point.
But with all of you praying, from LITERALLY across the globe,
exponentially increasing our own faith and prayers,
we thought he would be the exception.
Our boy must be the most prayed for baby in the world today.
We are touched to the depths of our souls.
But we're just one of a hundred families with a child in the PICU.
One of dozens of tragic, heartbreaking stories.
We are no different than they are.
The morning was off to a good start.
I was cautiously optimistic.
I actually felt peaceful for the first time since the incident.
I knew it would be a good day.
They got an early start.
We peeled a couple quick layers off Our Little Onion...
His fluid level is finally in check and the overall edemitus swelling is down,
so they removed his catheter and bladder probe.
Hallelujah for the bag full of pee!
His core temperature seems to be stable,
so they took out the esophageal temperature probe.
SO for anyone keeping score, that's two minor tubes down, one major tube to go for the day.
He was extubated by a few minutes after 9.
We were so optimistic.
Wonderful Dr. Bennett, who is always cautious, seemed confident.
Bronson was alert. Completely off his paralytic and all sedatives.
The extraction was less traumatic than we expected.
We'd been warned it could be awful. Lots of gagging and wheezing.
Scary for parents to watch.
It went smoothly. Slid right out.
These guys here are pros.
How can they NOT be amazing with all of your prayers for them?
The first half hour was exciting.
We sat him up and helped to pat his back while he coughed.
Matt and I each held a soft arm restraint from opposite sides of the bed,
to keep his hands away from his face, more importantly his tubes.
They first tried a standard oxygen cannula, just the little nose hose with prongs up each nostril.
He was still huffing pretty hard.
We waited patiently, singing Primary songs to him and trying to calm him down.
His color began to drain...
Our hearts began to sink...
They knew he needed more supplementation.
They changed out the oxygen hose to a High Flow Nasal Cannula.
He was still wheezing.
Working so hard to pull in air.
Panic and worry in his eyes. Looking from Mommy to Daddy and back to the nurses.
Not understanding.
Getting more and more agitated as they suctioned the secretions out of his airways.
We tried helplessly to soothe him.
He arched his back and kicked his feet,
struggling to get away from the helpful, but let's be honest, bothersome abuse.
Another idea.
A supplemental breathing apparatus called a Bi-Pap.
They program in a certain lung pressure and the machine helps him to maintain it.
They use a face mask with a huge hose that makes him look like a jet plane pilot.
It allows him to breath on his own,
but then calculates the deficit in lung pressure with each breath
and tops off each one with an extra little puff through the mask.
A-Maz-ing. Modern medicine and machinery are miraculous.
But, sadly, little Bronson did not respond quite as we had hoped.
They gave him as much time as they dared and chance after chance,
but ultimately, they decided his vitals were too high and he was entering distress.
He had to be re-intubated a little after 11:30 this morning.
It was excruciating.
Soooooooo disappointing.
So scary to watch.
So amazing to witness.
I thank God for these physicians.
They have my utmost respect.
They work as a well-oiled machine, not a cog out of place.
I am amazed at the positive energy that each and every one here exudes.
They speak with such kindness, respect and appreciation to one another.
Even amid intense crisis.
They are the calm amid the storm.
I am going to try to emulate that for the rest of my life.
Another life-changing lesson learned.
So, I wish I could wrap up today with a nice tidy red bow...
But, frankly, today was discouraging, to say the least.
It felt like three steps forward and two steps back.
Still dancing with his destiny.
I went to lunch feeling heavy-hearted.
We were riding this incredible wave of momentum.
Swelling bigger and bigger as all of your prayers come rolling in.
We were beginning to crest the summit.
To feel the wave slowing and come crashing down, felt like such a set back.
And then my Matt...
My sweet, sweet Matt pulled a rabbit out of his hat
with his positive spin...
There is no set back.
We are still two tubes ahead of this morning.
And two tubes is two tubes.
Even with out the big one we were hoping for.
We are still moving forward. Onward and upward.
At Heavenly Father's pace. At Bronson's pace.
We just have to be patient enough to ride it out.
Yeah. That's my Matt.
My Rock.
I chose well.
I am the luckiest girl in the world.

Ready to extubate...

Another 4 am Spontaneous Breathing Test came and went perfectly
while Matt and I slept a few hallways away.
This morning the doctors feel confident that he is strong enough to handle extubation!
Bronson can not WAIT to get that tube out!
Matt can not WAIT to get that tube out!
I can not WAIT to get that tube out!
It is the golden ticket that will land him back into my arms!
I can not WAIT to hold my sweet, beautiful, strong, amazing boy!.
They've just turned down the Precedex...
As soon as he wakes up...

Waking up...

This morning I woke with strong warm arms around me.
Strong warm arms that had wanted to go home and sleep in their own bed,
but stayed because I needed them.
It was a nice way to wake up.
For about two seconds.
Snuggled against my sweetheart.
And then I realized we were sharing a twin sized bed.
In a dark little sleeping cell.
Far away from home.
And the wave of remembrance washed over me like a wave.
Tangible. Heavy.
The familiar burn returned to my throat.
That lump came back.
Here we are.
This is where we live now.
I lay there letting it all soak in again.
Praying for another good day.
Thanking God again for all of the countless ways that this has been made easier.
The amazing things that are taking place.
The faith that is growing and chasing out the fear.
I sat up.
Wiped the tears from falling.
Took a breath.
Chose to be ready.
Bring it on!
Another chapter of our miracle.
It will be a good day. An amazing day.
I can feel it!


It just gets better and better.
He's been wide awake and super alert for the past couple of hours.
The doctors and nurses here are thrilled with his progress.
I am ecstatic!
The Breathing Trial was perfect.
He went without the vent for over two hours and never needed it once.
They will do another trial in the morning
and if it goes well they plan to extubate sometime tomorrow.
Heavenly Father is pouring down blessings upon this little boy
and on all of those who are praying for him.
I am hearing amazing stories...
I have learned that faith heals... Not just the body and mind, but the soul.
Prayer seals hearts together.
Even people who have never met in this life.
Angels walk on earth as well as in heaven.
I see their goodness with fresh eyes.
Thank you all for your strength and testimony...
I am in awe of you!