The Long Game

“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.

Blank stare.

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.

 

 

Touch

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! 


His dad, of course had to follow up with his own silliness. 😊

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. 

DBS is a Journey

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Looking toward the East Coast across Pamlico Sound

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.

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the beach 2014

Home

Ready to go. 


There is something about fresh air. Blue and I got outside for the first time in 4 days today…and we got to go home! 


He smiled to be outside, but later he squealed with laughter over his new bb8 toy. 

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. 

Want to go 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. 


Despite his wishes, home may be in our future (as in tomorrow). He’s doing well but we want to be a little more comfy with his stomach, bowels and pain management all running well.

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. 

A good day

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. 🤔

Hospital nights

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. 

All done 

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. 


We are so grateful that the surgeries are behind us now.  God has truly blessed us in so many ways. 

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.

It has begun

Daddy took him back around 9:30. 

They are being careful about the cochlear implants and had to take time for additional imaging and planning. 

They made the first incision around 11am and it will probably take another 3 hours to get everything in place.

DBS 2

It’s been one of those weeks. Twists and turns that leave you feeling a little shell shocked or gut punched or both…but not completely ignorant that you are surrounded with blessing. 

I still haven’t packed and can’t seem to make myself do it, so while I procrastinate into the 11th hour, I might as well take the time to give you a just the facts ma’am summary of tomorrow’s events.

Tomorrow morning (Thursday 9/1) we report in at 7:20am for the second phase of DBS, Deep Brain Stimulation

The procedure is likely to take at least 3 hours. (Apologies in advance if this is TMI, but understanding this means spelling it out.) They will reopen the 2 lengthy sutures on the top of his head and then thread/tunnel wire beneath the skin – along the back of the head, neck and shoulders.  They will also install the 2 pacemakers/neurostimualtors/batteries in the subclavical space of his chest and connect the whole system. 

The major work in the brain, this unbelievable appliance, has been put in place.  Tomorrow our neurosurgeon plays electrician and carpenter, creating new spaces, laying wires and getting it all connected to the power source. 

This tunneling and the large incisions on his head and chest can certainly be painful, especially when you have a tense body that moves against your will….not to mention new equipment on the back of a head that you regularly thrust against a headrest (ouch!!!).

We’ve recently tried pain meds with some bad results, so along with success of the surgery and remaining infection free our prayer is for pain management, a tricky beast for many kids with Kernicterus who adversely react to most pain medication. 

It is uncertain when the DBS will be turned on, but we are praying that this will be sooner than later, as it may help with Blue’s tone and ability to recover from this surgery. 

Also, please keep this multidisciplinary surgical team at Childrens Mercy in your prayers. They are so incredibly talented.  We deeply depend upon and are so grateful for them!  

A fun little video of Blue talking about DBS last month. I ADORE his voice and his bravery!!! https://instagram.com/p/BH3ipLqABNs/

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