Wiggle worm...

Auntie Bugud, this is for you...

(before you go completely manic from the isolation and the not knowing...)

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Sorry this update has been so long in coming... it's just been a tad bit busy!

But I hope you'll agree it was worth the wait...

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We are still not back to where we were three days ago,

(no tracking yet, and still a lot of open-eyed blank staring)

but we are getting occasional eye contact!

Here's proof!

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As of early Saturday morning, Bronson has 2 new periphreal IV's.

Crazy how many times this poor kid has had to be punctured, poked and probed.

Also crazy how little I care about those tiny little things any more.

Before this, I would get all worked up about a tiny scratch or scrape on my perfect little child.

Let alone a big ol' nasty bruise.

But let's face it, once your kid has been on life support for a few days,

a needle poke seems like a whole lot of nothin'.

So, the IV in his right arm got a little leaky,

and they put a brand spankin' new one back into his left.

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He passed his 9 am SBT with flying colors.

Perfect breathing without the ventilator for an hour.

But by 11, he was having increasing difficulty with his respirations, even on the vent.

He was pulling really hard with each retraction, getting more and more agitated.

I just feel so helpless to see him like that.

They took him off the vent long enough to bag and suction him.

I think I held my breath the whole time.

So, so scary.

The RT came and increased his pressure support back up to 12.

By noon he was relaxed and had started to get his color back.

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His brothers came for a visit around 2.

Bronson was in the middle of another SBT,

so we took a break while he slept and went up to the Children's Room with them.

Daynen just looks so big all of the sudden!

Why do they always wait to grow up until you miss a day or two of their lives?

Then they look so different!

Crazy!

Kaden made a paper mache mask and played in the arcade for a bit with Matt.

A racing game, I think.

Trevan colored a poster and then played Foosball with a hospital volunteer.

Daynen, well, he was Daynen.

He ran around like crazy and played with every toy he could get his hands on.

What a nut! I forgot how much he makes me chuckle.

Man, I miss those boys...

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Back up in B's room at 3, we found that he'd passed his SBT.

Yay! One more sign of encouragement!

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Then, late last evening, the RT felt it was safe to hold him.

It is quite a process...

They have to rearrange the room to accommodate all the tubes and wires.

Wheel the IV and Meds Pump Stand all the way around the bed.

Safety pin the vent tubes to your shoulder to hold them in place.

Position about 4 pillows to support him and all his miscellaneous paraphernalia.

Kind of a laborious task.

But definitely worth it!

I told Matt to go first.

Bronson slept through it the night before, but this time he became increasingly agitated.

We had to discontinue and settle him back in bed at about 11:30.

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We were all worn out. I could barely keep my eyes open!

We wheeled our big fat bags down the hall to the Parent Sleep Rooms

and looked for the Post-it Note marking our door.

There was no Post-it Note marking our door.

They'd forgotten to request one for us.

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Who could we call at 12:30 for a bed?

The gave us a list of hotels that offer discounts to PCMC parents.

Matt decided we should go home.

By the time we would call and find a hotel with availability, get there,

check in and get settled, we could be home, he said.

I get anxiety at the thought of leaving my baby.

That is how we got into this mess...

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I was exhausted.

I cried as we pulled our bags out the front doors of the hospital,

across the courtyard and into the parking garage to find Matt's truck.

The first time I'd set foot any farther from his room than the cafeteria.

Leaving our boy upstairs... alone.

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Matt phoned Alli and woke her up to warn her we were on our way.

We would just sneak in and sleep downstairs in our spare bedroom, he said.

We just didn't want to startle her coming in.

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I reclined the seat in his truck and cozied up in my blanket.

We chatted for the first few minutes of the drive, but then suddenly I woke and we were home.

Our wonderful, thoughtful Alli had changed the sheets on our bed and insisted we sleep in it.

I was too much of a wreck to argue.

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We slept like parents who haven't in a week.

We woke early. Before the boys.

Emptied our bags of dirty laundry. Repacked them.

Showered in our own shower.

Oh...

The shower...

Right by the tub...

I tried not to look at it as I walked past.

But as I finished my shower and went to step out, there was no bath mat.

Where was the bath mat?

Why did we have no bath mat?

And then I remembered it'd been covered in Bronson's breakfast during CPR.

Thank you to whoever threw it away.

I stood there, cold and shivering, trying not to remember as the scene flashed through my mind.

I could not stand there to get dressed.

There will have to be a new place now.

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Somehow Matt got me to finish getting dressed.

Kaden woke.

We had a sweet few moments, one on one.

Matt explained how to fast for strength.

Kaden said he might bear his testimony in church.

I asked him what he'd say. I wished I could be in two places at once.

We knelt and prayed to begin our fast.

We were in the truck ready to head back by 9 am this morning.

The neighborhood was quiet as we drove through.

I thought fondly, gratefully of my neighbors and friends as we passed each house.

Wondering when I might see them next.

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We called the hospital en route.

Bronson had slept soundly.

A sigh of relief.

We pulled in just before 10 am.

We wheeled our bags through the cold, empty hallways.

Smiling and waving to the now familiar faces as we passed.

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We went in to see our boy.

He survived another night.

Even without me by his bedside.

He's a champ.

Somehow I survived it, too.

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Sacrament Meeting is held in an auditorium on the 3rd floor at 10:30.

We walked into the room hand in hand to meet the warm, welcoming gazes

of doctors, nurses, parents, various patients and the angel volunteers.

It was a group of about 60.

We sang and we prayed with strangers we felt strangely akin to.

The Sacrament was blessed and passed.

I thought how broken our hearts were.

How contrite our spirits.

Now, more than ever before.

The Sacramental Prayers had new meaning as I heard the promises again with tender, new ears.

Oh, how grateful and unworthy I am to take His name upon me.

Oh, how I need to remember Him, always.

Oh, how I need His spirit to be with me, to comfort and guide me.

And oh, how grateful I am for His cleansing blood. Which was shed for me.

Just a handful of testimonies were born.

Humble. Touching. Powerful.

We both quivered as we tried to sing the closing song.

A familiar favorite, now with new and deeper meaning.

"Because I have been given much, I too must give.

Because of thy great bounty Lord, each day I live.

I shall divide my gifts from thee with every brother that I see,

who has the need of help from me.

Because I have been sheltered, fed by thy good care.

I can not see another's lack and I not share.

My glowing fire, my loaf of bread, my roof's safe shelter overhead,

That he too may be comforted.

Because I have been blessed by thy great love, dear Lord.

I'll share thy love again according to thy word.

I shall give love to those in need, I'll show that love by word and deed

Thus shall my thanks be thanks indeed."

I bowed my head as the closing prayer was offered and promised my Father in Heaven

that I would never pass up an opportunity to serve someone in need

if I had the means to help them.

I am so unequal to the blessings that are continually poured out upon me and my little family.

Many from Him, and many by those of you who serve Him faithfully.

If I spent the rest of my days in constant service,

I could never repay you for all of the kindnesses extended to us.

Let alone my debt to Him.

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We arrived back in Bronson's room feeling nourished and strong.

we spent a couple of quiet hours listening to Primary Songs and reading.

He passed another SBT but then we found him struggling.

As soon as it was over, he began to seem tachypneic ( pronounced tah-kip-nic).

That's a big fancy way to say he was breathing really fast and hard,

with a heart rate to match.

He seemed to be pulling in so hard for air. Like breathing through a straw.

Retractions heavy. Head bobbing. Looking exhausted.

They bagged and suctioned him.

I hate that.

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A little after 4, I noticed his tummy looked a little too rounded.

It was unmistakably distended.

I pointed it out to Molly, the Nurse, today.

She agreed.

She called in Cory, the Nurse Practitioner,

and together they decided another NG (Nasal Gastric) Tube was the best course of action.

Using a large syringe, she pulled out over 180 cc of trapped air

and about 50 more cc of stomach fluid. Poor kid.

Once out, it seemed to relieve the pressure and his tummy softened and looked normal again.

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A little after 6, he had his 8th poopy diaper of the day.

As I changed it and weighed it for the nurse, I noticed that his poor bum is looking quite red.

Not just a normal red, but bumpy and fierce.

I knew right away it was yeast from the antibiotics.

Molly called Cory again, and they both concurred.

They wrote up an order for Nyastatin ointment.

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Around 8, they started him on his final SBT for the day.

He was resting so soundly, I wondered if it was really worth bothering him.

The RT assured me that it was worth the exercise

if we want to strengthen his little lungs enough to have a chance at extubation tomorrow.

Alright, already...

He sailed through it.

Yay!

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The only other thing worth mentioning is that he found his own new little groove today.

He has figured out how to wiggle worm his way down into the crib

so that he is laying at a diagonal,

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with his right arm up above his head

often grabbing the siderail pole

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and his left foot pressing up against or hanging out of the other side.

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And usually tapping.

He is insistent about maintaining this position!

(Funny because he does that at home!)

Molly, Matt and I all tried for several hours

to straighten him into a more comfortable looking position,

propped up and laying straight, but he was NOT havin' it!

It only took him about 30 seconds to rerrange himself

RIGHT back to the way he wants to be, each time.

We finally gave up trying!

Hey, if that's how he's comfy... Whatev!

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He has also started doing this crazy yoga maneuver, something like a complete backbend.

He doesn't seem to be particularly agitated or bothered when he does it,

just every so often, but dang!

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He wants outta this bed!

He's a strong little sucker!