DBS Day Deux
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…
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