a Rearranged Life

Speaking into my own years-long radio silence here today. I can’t even begin to play catch-up, so I will just speak for today.

Today we wrap up our third week in the PICU for what began as some midnight vomiting, then escalating his body into what is called status dystonia (or status dystonicus) and necessitating a medically induced coma. A CT that day revealed a bowel obstruction. Emergency surgery was performed that same day to remove a section of tangled bowel. In the days that followed, our boy wasn’t progressing, and still wasn’t moving his bowels. A second CT of his belly revealed that an abscess has formed in his abdominal cavity, as some contaminant or stool may have escaped during the surgery, causing this pool of fluid where it shouldn’t be.

2 days prior to this midnight wake-up call, we had put down our almost 3 year old pup, and I’m currently running faithful old Malcolm (Blue’s service dog of 8+ years) to the emergency vet for some more labored breathing while my husband waits in the hospital for our boy to come back from another CT. Tough as this all sounds, we’ve seen friends with children who have kernicterus endure far far more for much longer. (Take away: kernicterus is a four lettered word!) There are positives in the midst of this – the stable past few days our boy has had, the girls being able to visit with family, step away from the chaos and have fun during their spring break.

Today’s sermon was about worry and the Ebenezer’s that reveal God’s provision along the tough paths we’ve already endured.

I’ve been obsessed with painting rocks for the hospitals chapel rock garden this admission, and had totally been forgetting about this thing the Israelites did – posting rocks along the way as reminders, landmarks, of how God had carried them through impossible trials in their yesterdays.

Not sure what tomorrow holds, and feeling every bit of Micheal Card’s song, “In the Wilderness.” Here is an abbreviated version of the lyrics:

In the wilderness
He calls His sons and daughters
To the wilderness

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

In the wilderness we wander
In the wilderness we weep
In the wasteland of our wanting
Where the darkness seems so deep

We search for the beginning
For an exodus to hold
We find that those who follow Him
Must often walk alone

In the wilderness we’re wondering
For a way to understand
In the wilderness there’s not a way
For the ways become a man

And the man’s become the exodus
The way to holy ground
Wandering in the wilderness
Is the best way to be found

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

Groaning and growing
Amidst the desert days
The windy winter wilderness
Can blow the self away

In the wilderness
In the wilderness
He calls His sons and daughters
To the wilderness

But He gives grace sufficient
To survive any test
And that’s the painful purpose
Of the wilderness

And that’s the painful promise
Of the wilderness

From the wilderness…Ebenezer!

Tomorrow we go in for Deep Brain Stimulation.  Again.  We lost the DBS last year to infection.  In the year that followed, we’ve become much more intimate with this hospital. In and out.  It’s been a home and a prison and a harbor more than ever. Procedure and surgeries and complications one after the other.

Blue is in the MRI scanner.  I’m in a waiting room. The girls are a thousand miles away on a pickle ball court.  John is at work.  My heart is fractured and full to the brim.

Enya plays.  It was my labor music.  John made me mixes for each of our babies. Breathe in. Breathe out. Breathe.  Let go…of pain…of fear.  Don’t tense against contraction.  Don’t impede the babies progress.  Surrender to the pain and it becomes less, the baby pro, let the child advance their way into this world.  Release tension that would hold on.

Electric soothing cords somehow drown out the Nick Junior toons that the little kids are all busy ignoring, playing with tablets, asking questions, keeping busy.

Tomorrow and tomorrow creeps in this petty pace…

– Shakespear

Broken dirt, hard clumps in the garden last night, I break them in my hand as I put seeds into the soil.  I want to talk about my garden.  I want to tell you about the good stuff growing in the middle of all those weeds, the bricks full of purple splotches below the mulberry tree…not medical lingo and projected futures and hopes, but Enya pulses and I remember that the story growing in this sterile-ish place needs sunlight too.

Since loosing DBS last summer (the infection had gone all the way into the brain, so the whole system, wires deep in the brain, had to come out).  In the months that followed we didn’t see what we expected to. Blue’s tone was not horrible right away, but he kept indicating that he wanted it right back in, that it helped his body more than we’d ever see and he needed it back.  Months of antibiotics and treatments with side effects (some life-threatening) and surgeries followed.  Over the months the dystonia slowly worsened, muscles grew more tense (the benefit of DBS can last many months after it’s gone as the brain has used it to make better movement patterns).

Horrible headaches kept coming and staying longer and longer.  Here and there treatments would help…for a while.  We had to go to the hospital many times as pain drove his heart rate up and headaches, migraines, got tougher and tougher to break. In April we stayed for a week.  In May we stayed 2 weeks and then finally left in frustration, headaches unchanged.  Spinal taps / lumbar punctures brought complications and also revealed building pressure in his brain…not quite enough for a shunt, but enough to warrant new meds that have been tough to handle.

Blue’s current migraine has not broken since it began in late April/early May.

A 2-month-long migraine.

And what do the doctors say?  Their best guess is that the increased tension in his body leads to worsened migraines and the migraines then lead to more tension.  Their best hope – repeating the DBS.

Tomorrow at 6:15am we begin this journey again.

D-Day was a costly day that turned the tide.   That exactly how Blue feels about DBS, even with the casualties, the permanent swallowing difficulty, the pain and frustration that programming can bring, the horrible ordeal of the infection, it turned a tide in his body, it gave him better control, it tricked the injured part of his brain into firing better, giving him some precious bits of relief and control.

As we are on the precipice of on our second DBS day we pray again that this tough battle will the shift in tide needed for relief.

I took the turn and turned to

Begin a new beginning

Still looking for the answer

-Enya

A lot has been going on out in the wilds of Kansas these days.  As many of you know, I lead a non-profit called pic-K, a calling that guts me and fills me up!

In October, just 1 month after my son’s brain surgery and weeks after our VP Susan’s daughter’s brain surgery, God had great mercy and we were able to throw together an amazingly fun and special gathering for well over 100 folks that we highly esteem.  We had incredible help and I count them in that number.  At this very last minute conference, we got the chance to work with Oliver Hughes Productions and throw together an even more last minute video, a video that we are very proud to share and to encourage you to pass on as well.

This video needs no into.  It tells our story and it reflects it through a hall of mirrors…and I’m not sure where/when that hall ends.

Perhaps you can spread the story too.

One click.  One share could save one of the 9 babies who will develop Kernicterus today.

#jaundicecandothat #jaundicemattered #preventableraredisease #rarediseaseawareness

For my boy, and for all of the beautiful babies at risk…watch, share, follow, or give time or resources!

 

There is a corner out there.  You turn left and the brackish water curves this way and that.  Then you are in it.  In the sound.   My girls knew what “the sound” was.  We’d been going to the outer banks of North Carolina for a few summers.  They had looked out on it from a distance.  Driven beside it.  We’d driven over it – all the scenic bridges.  Seen it form the windows of the rental homes we’d stayed in.

But there was something about this time.  In the water, rounding the corner, the expanse of water suddenly surrounded them.  It took their breath away.  What looked exhilarating from a distance was terrifying for my girls. No end to the water.  No land in front of them.  The still expanse of water as scary as any monster.

Vast and foreign, they were overwhelmed.  Too much unknown.  My 4-year-old went into a panic.  She could not settle down until we were back in the winding canal. The big-ness was too much.

I’ve seen DBS first hand.  We’ve watched the ups and downs that our friends Lexi has endured for the past 7 years.  We have read about this since our boy was a babe, watched hours of webinars, read many articles.  We’ve seen the expanse ahead. But to actually round the corner and be in the water?  It’s honestly more than a bit terrifying, and challenging.

It’s no small amount of water we’ve just paddled into.

Settings are tricky.  Programming is complicated.  Pain, frustration, fatigue, they come and go and it’s going to take time.

When the was first turned on it seemed okay.  But then it wasn’t.  Our boy was in pain and of course he couldn’t tell us what any of it felt like.  But at 4 in the morning after a night of moaning and tossing,  my husband and I decided that we had to turn it off.  Tears piled in my boy’s eyes in those wee hours of the morning.  I saw a different pain in his eyes, a fear that this was all not worth it.  Perhaps this was it.  We were able to explain that this is trial and error, that it won’t always hurt, that we will keep trying to find settings that work for him.

Today started rough, but turning the thing back on and tweaking settings was very encouraging.  He had perhaps his best PT session ever this afternoon.  Calmer body with some intentional movements.  Hard work.  Lots of hard work, and really good work too.

It’s an unsure first paddle into the expanse, but we are not alone.  Never.