DBS, coming right up
Deep Brain Stimulation.
Almost as soon as we got the verdict of kernicterus, in those early years, I read about a case of dystonia being cured by DBS in an alumni publication. Those pictures. That boy with the dark hair. I read this over and over. He went from a wheelchair back to walking.
A wheelchair to walking.
(We’ve since learned that our case is different and this would be a LONG shot, but still worth trying for even a fraction of that, and you can read on to see why.)
We’ve been studying this option ever since that article. This spring, as we maxed meds and began to see orthopedic issues arising, we decided that we could wait no longer. There is a big need to fund this research and while we’d like to wait longer, our time has come.
There is no other case we can find quite like it – the cochlear implants, kernicterus, 4 leads. Many of our questions may not be answered until we take this plunge, but take it we will. Nerve wracking as it is, we have a lot of confidence in the amazing group of surgeons assembled on Blue’s team, and we are very much encouraged, seeing our bud Lexi go through this before us.
A close friend recently told me, “At this point for Blue, every move you take forward has high stakes.” She’s right.
As friends offer to pray and seek to understand more about this process, here is the info.
What can DBS do? For a kid like Blue, this can decrease tone and involuntary movement, increasing their ability to control their own body. Let that sink in for a second and think…miracle.
How much benefit? In our case – no one knows. This could be (and is maybe more likely to be) a marginal improvement, a small % benefit….but these are HUGE things in my son’s life. A 10% increase in the ability to hold something, to reach, to sit? A 10% decrease in tone, keeping those half a dozen orthopedic surgeries we keep discussing at bay or maybe rendering them unnecessary (high tone and involuntary movement wreaks havoc on your bones as they grow)? In short, this is a miracle. In the best scenario DBS uses electricity to trick the brain out of the movement disorders. We pray and believe that this miracle will be WAY beyond any expectation.
How does this work? In Blue’s case this will mean 3 surgeries.
1 – This will be the pre-DBS surgery, August 15. 
Essentially it’s an MRI sandwiched between two little surgeries. He will be under anesthesia for all of it. The MRI will be used to map the path they will take in his brain during DBS surgery, but you can’t have magnets in your head for an MRI can you? So first they will first surgically remove both internal cochlear implant magnets, place spacers and stitch him up. After the MRI they will take him back to the OR, put new magnets into the cochlear implants in his head and close him up again. Maybe a few hours under, and then we should go home same day.
2 – We will call this DBS part one, August 18. This surgery is the most intense of the 3, by far. They will spend the entire day in surgery drilling and probing deep into his brain to find the perfect locations for the “leads,” the wires that will deliver the electricity to the damaged spots in his brain. In most patients they place 2 of these. In Blue’s case they will be placing 4, in the VL of the Thalamus and in the GPI of the basal ganglia. Blue will need to be awake and responsive for part of this surgery and we are not yet clear on whether he will be able to hear for this. After this surgery is done he will need to stay the night in ICU. This will be approximately 2 nights in the hospital, maybe longer.
Pain management is often difficult for Blue, given the way that his body will become very tense and worsen the pain. Pain meds have tended to have a reverse effect in the past, only make the problem worse for him. We pray that for both of these surgeries this will not become a big issue, prolonging his hospital stay. We want the boy comfortable and healing well!
3 – DBS part two, September 1. In this phase they will be installing two pacemakers/batteries/neruostimluators into his chest. These devices will connect to the new “leads” installed in his brain and will be the source of power for the whole crazy thing. This is the most painful (and pain management has been very complicated, to say the least, in the past for Blue). These will go into his chest in the subclavical space.
When will this start to work for him? In September, they will begin to turn this on. (September also marks 11th anniversary of his brain injury (kernicterus), how is that for timing? From the hands of the surgeon, a great outcome would be no less from the hand of God.)
This will be a PROCESS. From here on out, we will charge batteries in our son’s chest every few days. Appointments with the movement-disorder-specialist/programmer/neurologist will ensue. These will typically be 3 hour long appointments and they will be intense…lot of physical effort with weird new electric current going through his brain. Sometimes they say it feels like sticking your finger in an electrical outlet…but on the better days it will calm his body and give him more control. It will take patience and intensive therapy for months, years to re-train the body.
Even as I say this I think of the gains Blue has made over his life, the little miracles like getting rid of the j-tube, switching back to the G-tube (stomach tube feeding a versus the intestinal ones). I think of the ways he has worked so hard to prove himself in school, over and over again. We give thanks for God’s provision in the past and we look for it in our future.
What does Blue think? This kid. He is by far the bravest and most adventurous person I’ve ever met (and I’ve met his father…so we are saying something here). He knows it is no promise, but he is ready. He can’t wait, actually, like literally can not wait. He’s sat through every one of these appointments, including the ones with the orthopedist where we discussed all of those surgeries on the horizon. He knows that he’s already maxed the adult dose of his muscle relaxant. He’s more than aware of many many medications that we’ve tried that didn’t help him. He perhaps knows more about this surgery than we do and he has hope and a lot of it.
a Rearranged Life 
Hi Miriam, this is amazing. We will be praying for you and your family. In other good news, Ruth’s book comes out in May with Hendrickson, a publisher that shares space with CBD. We’re moving forward with helping other kids like her in Uganda–wouldn’t it be great to tackle kernicterus there too! We shall see how the Lord moves. Send me your email to keep in touch, mine is meadow@meadowrue.com Blessings!!!
Miriam,
Thanks so much for explaining DBS so well. Praying with you-praying for miraculous results and pain management.
Your family-I am so proud of each of you for meeting “this” (Kernicterus) challenge full on. You and John are exactly the right parents for Blue and your girls.
We Love You,
Wow, what an amazing surgery/procedure. I will be praying for your family.
Can’t wait for this boy to become Ironman!!
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Miriam,
You and your family are strong and courageous! In the midst of your son’s lifetime process, I am drawn to God’s work and praise him for giving Blue you as his mama. What trust and strength you and Jon exhibit and model for your children! Praying and I’d be happy to watch the girls anytime you need if I can!
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