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
I wrote this a couple weeks ago. At this point we are closer to a new normal, but in order to keep you folks updated, it is worth posting.
Her wisps of hair-sprayed brown granny curls shook a bit as she pointed in our direction and said the words. “Look at that good little boy!” and turning to her grandson, “You need to sit still and behave like that good little boy.”
And there we sat, or at least the late 20’s versions of ourselves, pretending we didn’t hear. We pretended for what seemed like a very long hour. We were trembling somewhere deep in our souls while we sat in our booth at the seafood dinner, first vacation, new baby girl in my arms and our 3-year-old son strapped into his adaptive feeder seat.
She said it a dozen times if she said it once, pointing to our young boy every time. Our little boy who was clearly restrained and mute with what looks/looked like spastic quadriplegia as the exemplary little boy to her able bodied, and by all appearances – well behaved (at least by our standards) grandson.
We never said a word. I think we were just struggling to breathe.
A month ago our boy was injured in a new way, and a word that I’ve feared his whole life became a reality. Aspiration. Two weeks ago it was confirmed…and it was bad. The swallow study revealed that even tastes of food, sips of drinks could mean pneumonia.
And of all the surgeries, all the struggles, this is a blow right to my heart. Maybe because food is my love language, maybe just because it’s a mother’s first job – providing nourishment for her babe, maybe because I know too much about the roads kernicterus kids can travel. Maybe because HE knows. Maybe because my son is sad and fearful too. He’s growing up, and growing up with so very much on his plate.
This past week the pulmonologist walked in the room and immediately told me he was aspirating on his own spit.
Cough assist machine, suction machine and pulse oximeter are now new parts of our life.
The same day I sat in my husband’s appointment to discover that he needs shoulder surgery. Full rotator cuff tear and tearing of the labrum as well. December 29th, that adventure will begin.
We powered the DBS completely off for a week, and discovered a few things – 1 the DBS has really helped his body, big time, 2 – the swallowing didn’t get better with the thing off. The CT came back with no abnormalities, aside from the metahuman-like impressiveness of the cochlear implants and DBS in that noggin.
We don’t eat dinner as a family anymore. It’s too hard to see silent tears slip down his face.
We sneak food. We walk around the corner to take a sip of water.
Somewhere in the coffee aisle, I very nearly fell to pieces in the grocery store the week of thanksgiving. That would have been a pretty site – the ugly cry with howling for no apparent reason? But in my defense – one huge building full of food that my boy cannot even taste, sip…nothing, it was just too much in that moment.
Kernicterus rocked his senses in so many ways – hearing, vision, touch and now taste too. Smell is something more like torture to him now.
And my boy is getting better access to his computer with eye gaze, and we hear his frustration. His rightful angst comes out. And what do you say to the smart little boy who has had so much taken from him? What do you say?
I wonder if what the cover in Sunday School get’s anywhere near the mile-long ache that my boy is feeling.
No one has been able to explain it to me – the why, the how. But I know the when. October 19.
It happened on the day we had DBS programming. Significant changes to the voltage being delivered to my boy’s brain made his lip quiver all day long with a couple of other (in retrospect) stroke-like symptoms. It was only on those settings for a few hours but they did quite a number on his body.
For 2 weeks we watched, worried and brainstormed as he choked on nearly everything, including his own oral secretions. On a school field trip he even turned purple. We knew something was wrong and just kept asking.
On 11/4 it was revealed that my boy’s ability to move food and drink safely was badly altered. He aspirated everything. In every position, consistency, presentation. “Aspiration. Penetration. Aspiration.”
I heard those words for an hour and so did my boy. This wasn’t my first rodeo either. I’d been to 3-4 of these gigs with Blue and he always passed with flying colors. He’d been successfully eating and enjoying food for his whole life, supplementing with his feeding tube.
I suppose the majority of folks with his level of severe physical disability have some cognitive impairments. He has none. Blue has been the happiest kid I’ve ever know.
In these past weeks, sorrowful looks, tears, and lots of words like “can’t,” “sad,” “eat,” “drink,” “please,” “bad” keep playing on repeat. Now that the DBS is off, communication is much tougher. Not words. Just quivering lips and eyes full of sadness.
I read Joseph’s story with him tonight and his face grows long, lip out, stray tears falling. He hears the story. He knows the story. He feels the story more than any 11-year-old I know.
I’m not sure how much of the story I ever really heard as a kid. I’m not sure I gave much thought to the pit, the betrayal, the enslavement, the imprisonment – the long tormented years, the isolation. Maybe I only saw the virtues of the man, not the battles that got him there. Maybe the path to being exemplary, to being holy, to being a hero isn’t so painless. My boy is already a hero, I just pray that in this silent struggle to breathe, to swallow, to speak, to heal that he holds tight to the God of Joseph, David, Daniel…all of the lonely heros.
“Joseph was a good boy. Look at the good boy. Can’t you just sit still like him?”
“Everything is better now, right?” The poor girl had the misfortune of being the 20th person that night to ask for an update on my son. At that point my husband had nothing left.
He literally just had nothing left and didn’t want to be rude and say the obvious truth, the truth that she seemed so exuberantly oblivious to.
Don’t get me wrong, we are incredibly grateful. It is NO SMALL THING that our son got through 3 surgeries in 2 weeks time with no complication…and deep brain stimulation, no less.
But yes, my son is still in a wheelchair with his body strapped down in more ways than I care to count. We still assist with every element of his needs, as much or actually more than any 4 month old child would need. He’s a smart cookie, so in addition to the physical needs we have to have a lot of supports in place to help him express and interact with his world. But never enough. We rarely know his feelings and thoughts, which is no small thing on a parents heart, especially when your child is undoubtedly going through pain and odd sensations of all kinds.
As for the DBS, this is a long game. We knew that the hard part would be the additional strains and needs post-surgery, but now we are IN it. And knowing a thing and being immersed in it are 2 very different realities.
DBS programming is a long and tedious process, especially for Blue’s diagnosis and inability to communicate. Every week we spend 3 hours at the hospital messing with the voltage in his brain and guessing and praying that it will help. It’s all guess w0rk.
I try with everything in me to understand what hurts and what helps.
And it saps me. I skip social events just to sleep. My neck spasms more. Homework keeps coming. We still are interviewing and searching for nurses and helpers. We currently have 4 of our 60 allotted hours filled. Other doctors appointments. In several sectors of life we are fighting to get what our boy needs.
I’m also in a position with pic-K.org where I am seeing what is sometimes a daily influx of new cases of horribly mismanaged newborn jaundice…other babies forever altered by something so preventable…something labeled as “extremely rare” happening way too often.
We actually did a conference here on October 1st and I got to share a room with 20 amazing families. We shared tears and smiles as we both mourned what happened to our kids and celebrated their indomitable spirits. That is a chapter in and of itself…and I have no idea how myself and 2 friends pulled that miracle together in 1 month of planning and post-surgical living…but by God’s grace it did come together and I pray it blesses and encourages each of these families in their journeys.
So as an update, no it’s not all better. It’s harder in many ways, and I can’t say that it will all be okay (we’ve had a recent setback that has gut-punched us and I’m still processing that one). I might not be able to offer you any comfort that can leave you able to walk away with a smile and a nod…although I mostly really wish I could.
But even on the hard days like today where I spent too much time battling on the phone and in offices and sleeping and dealing with my own pain in PT – I know that hope never dies. It is rearranged and reconfigured, but it never dies.
The expectation of wellness, of happiness of function may be forever altered, but hope and joy are not dependent upon circumstances. It’s not all better now, and it doesn’t have to be.
One breath. One step. One Prayer at a time.
As we leaned over his bed and said bedtime prayers, his hand slowly drifted up, fingers open.
For the first time, my boy, ever so gently, caressed my face. (Previous attempts had quite a punch behind them due to the movement disorder.) This was entirely different and sacred.
Thank you Jesus for the miracles every day!
The laughter, the controlled and tender gesture from son to mother. This new territory that we live in while sisters flit around in fairy costumes and climb doorways….I’ll take it. I will gladly dwell in this place.
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.
Ready to go.
Although I had a hard time staying awake on the drive home I was so elated to be outside and to be headed home!!!
And as I pack away hospital bags full of medical supplies it starts to hit me.
I go into full on panic over the setup in in his room, earlier today the same sense of panic gripped tight…about finding my sandals.
Only it’s not the sandals or the messy room. 3 surgeries in 2 weeks. The reality is just now hitting my body like a train.
Acting as nurse/mama even more full time than usual (with a month off school and more recently bedding over a hospital bed for 4 days). So yeah, I may have had a few little meltdowns today. My neck may be back in full spasm, and I’d be lying if i told you I am doing good.
But my boy is doing very well! Aside from the idea that he has a major power cord running along his skull/neck (that might have been source of panic attack 3 today). He’s only taking the heavy pain med once a day and he’s just on Tylenol and Motrin the rest of the time.
His stomach isn’t back up and running yet, and by that I mean I have to maneuver the big boy into like a pelvic tilt and manually get air out of his belly with his G-tube every hour and we are waiting for the bowels to wake up. But really those are expected post surgical things for us and we are very glad to have him home and doing well!
Thank you all so very much for your fervent prayers and kind words and gifts and food!!!! We can’t even process it all, it’s so humbling and amazing to think of how many people are petitioning and cheering for this crazy DBS apparatus to be rocking awesome for our boy and his grand adventure! (Adventures being big scary quests that forever change you and your impressions of life, right?).
Never alone. Always loved. Home.
We asked the kid if he wanted to go home, or no.
He stared intensely at the the “NO” hand.
(We hold up hands as we ask a question, so he can look at the choice he wants.)
Comfy bed. Pretty nurses. Food on command. Both parents to take care of your every wish. Endless TV.
I might say no too.
At the moment he and dad are zoning out to some Sponge Bob while kicking back some eggs, sausage and hash browns.
The doc estimates at least a month of neck pain from all the tunneling, so we will keep up the pain meds. He keeps that shoulder drawn up. My neck cramps up just looking at him.
Normally only 1 or at most 2 wires pass through on each side of the neck. In Blue’s case they had to do 4 on one side. So after they pushed the rod through to tunnel for 1 they then had to expand the space and cram 4 wires through…ouch! But this may make things easier with the cochlears and revising and stretching things later for growth…I hope.
No word yet on when it will be turned on.
Momma may miss these night nurses coming in every couple hours and giving meds… Our stay here has been absolutely great! But there is no place like home, and fresh air.
The boy did great today. Still taking 3 pain meds in addition to a few other things but handling it all like a champ and seeming much more comfortable.
We loved seeing a few smiles and laughs here and there, especially when his buddy Malcolm (our service puppy) came for a visit.
Hoping to get home tomorrow!
Ps – I never knew it was possible to love a hospital bed…but this is a GREAT bed for our wiggle worm!
Now to figure out how to recreate this cushioning at home. 🤔
I seriously have no room to speak here. I have dear friends who have endured month upon month of crisis in the hospital.
This is not a crisis. We won’t be likely to be here for long. But it was a bit of an uncomfortable night for Blue with a fair amount of breakthrough pain on maximum doses of meds.
The precious champion of a boy is sleeping now though, so I’m going to do the same.
The surgeon told us that all went well!
Blue is now recovering in a room. And when this tall boy’s bed wouldn’t fit through the door? Dad was on the floor in his bunny suit before the crowd of nurses even knew what was going on. (Narrowing the frame of the bariatric bed.)
Pain is quite an issue. Incisions all across chest, and all (and I do mean all) over his head. We counted 50 stitches last time and I imagine he has at least 3 or 4 times that now….and I have no desire to count them.
The good news is that (thanks to our friends with Kernicterus who also have a rough time with pain meds) we’ve found a pain med that is helping so far.
Chewie, unfortunately is out of commission. He took the blast when Blue got sick to his stomach, but iron man is standing in now.
Our sweet funny boy with the horrible hair cut had big smiles when he saw his new DBS equipment. He is something else!
Blue will get his DBS turned on some time next week.
And the shell-shock is still there. We cannot quite compute all that has gone on…today, this month, the past 11 years.
Let the recovery begin! And may the pain be under control as the anesthesia continues to wear off.