Multiple surgeries to follow this summer (one with the same wack haircut he got last summer).

We wait for a phone call…days, weeks, a month? 

Much on the line.

They talk of things looking infected, of pulling all or part of the whole Deep Brain Stimulator**, the implanted system our boy’s body relies upon.  (This would mean long months with no DBS to help him.)  OR there could be miraculous news that will allow him to keep the DBS and move the implanted batteries to new spots on his body where they won’t threaten to rub their way through his skin.  It will take up to a month to know. (Be sure to read the footnotes if you want more info.)  Movement disorders, wheelchairs and implanted devices sometimes don’t play nice together. 

For now, he heals.  

He smiles. 

He laughs. 

He enjoys the kisses and entertainment his sisters dish out. 

(This surgery wasn’t so bad.  The next one will be tougher.)

My husband and I? Honestly? We feel like we’ve been run over a train.  Kernicterus happening.  Old wound opened with new trouble.  On the flip side we’ve been incredibly blessed.  And strange as it sounds, the trauma of a disability and the blessings in a life can dwell in the same sentence.  The two emotions can live on a see-saw gone mad.

In that doctors office on Tuesday, as one-more-thing had my boy in the cross-hairs, as the doc confirmed my suspicions and we began to plan for the surgery that would get bumped up twice – I saw him, I saw my healthy gorgeous baby.  Next came an image of a nail being pulled from a horse shoe played on repeat.

We aren’t just very unlucky people in the world.  A very bad thing happened to my boy when he was new, and it’s just still playing out, still affecting everything and everyone in our world…for want of that nail.  One thing taken from him back then – face reaching consequences today.  Kernicterus.

So we wait.  We wait to see what happens at this fork in the road, how the cultures come back.  We take time to absorb the shock and lift up heartache while we work on being present, on soaking in the precious things happening all around us (things we would take for granted in that other life).  We solider on and we cherish.  We cherish this boy’s smile that cuts through grief.  I cherish my garden that grows in the oppressive heat of summer, and the way that our house echoes with kids arguing sisters (well, maybe not that part…but I have to throw it in so as not to leave you with an illusion), and ridiculous antics and the ever growing zoo of creatures here that light up this boy’s life.  We soak in the squeals of laughter of delight our boy has over his favorite movies and things.  And we cherish our precious friendships!  We don’t do much to pay in, other than to share our raw existence in bits and pieces, and you give freely!  We love you very much!

One. Day. At. A. Time.

UPDATE: The DBS is infected. The team is now working on plans for removing/explanting the DBS. The neurosurgeon’s office is talking about surgery in one month. Blue is in pain and we very much hope to convince them to do it sooner but have not yet been able to talk with the surgeon. 7/9/18

UPDATE: surgery Friday. Pulling it all. Beginning to power down today. 7/10/18

Blue today.  First day out of bed.  He’s been in great spirits, enjoying some TV and family time as he heals and waits.

One of Blue’s DBS batteries migrated/shifted under his skin on his chest and began actually eroding through the skin last month.  Despite our best efforts to reach out to his docs, contain his movement, and cushion the site, a top layer of skin broke on the 4th of July.  (The implant did not come through.) When the neurosurgeon performed surgery to look at the area and scoot over the battery on the 5th he said that it looked very suspect w a lot of gelatinous fluid around the battery.  He cultured the area, looking for slower growing bacteria, moved the battery 3 inches over, cleaned Blue out w antibiotics, closed Blue back up, and sent us home w more antibiotics to wait for the lab to see if a slow growing bacteria appears in the culture. The “what’s next?” possibilities are worthy of a wall covered in expo marker.  We will pray and we will see.     

**DBS was a 4-part 20 hour*** brain surgery that Blue had in 2016 to decrease his severe movement disorders and tone. Prior to DBS Blue’s body would writhe for hours every night, and he would cry out in pain as his wheelchair rattled. After DBS, his movements were much more calm, and evenings were no longer filled with that particular torture. He still moves a lot and has a lot of tension in his body.  Our reality means that what others might call a marginal improvement can make a big difference in quality of life.

In 2017, this same battery was also relocated because of it had shifted/migrated higher towards his neck and was causing him significant pain.

***Twenty hours is much longer than most.  Blue’s was longer than most because he has 2 cochlear implants with magnets that are not MRI compatible.