I still get insomnia the week leading up to it.
Still have to take extra care to prep myself in the morning before I go.
Still talk myself through the anxiety of what I’m about to do.
The bigness, hasn’t waned for me.
The dangers haven’t diminished either.
Every time I go, it is this sacred moment between I and I. Between what SMA has done and what it intends to keep doing. Between how I want to live and how I’ll go about living. Between this genetic mutation living under my skin, in my muscles, through my life and my will to stop the ravages, settle down the fears, slow the progression… give me time.
It’s this silent conversation between Me and SMA about how this living is gonna happen. That I will eat the foods I once enjoyed, I will have the experiences I thought forever lost, I can have a small hope again for things unimagined.
And so, I schedule my procedures, I do my labs, I show up to this miracle.
I’ve been arriving while they have their lunch. They graciously let me in, I say my Hellos to whomever opens the door and I wait, fiddling with my phone by the check in desk while they eat and speak about life, tv gossip, laugh.
Eventually, slow and slowly, they￼￼ trickle to the front and I finish my remaining hellos. This team of eight months ago is now a tight knit, well oiled machine￼￼. They have the Hoyer lift ready, the gurney all set, and their game plan all mapped out.
Right before they were done eating, a call was placed to have me checked into the hospital. With my wrist band on, we proceeded to get me ready for the procedure.
Shirt off. Gown on. ￼￼￼￼ Mask always.
While on the gurney, ￼Nurse Jenny went through my intake carefully and methodically. It would be her first time witnessing my procedure.
Sometime between gowning up and being hoisted onto the gurney, the call had been placed to the pharmacy to ready the Spinraza.￼
Last minute check in with heart Doc and Doc Doc and it was showtime.￼
￼￼￼I was placed on the procedure table, my right arm slightly askew. I didn’t think anything of it and told Doc that, yes I was comfortable and so he began.￼
After the area behind my right ear had been cleaned and the plastic surgical drape placed, ￼￼the two pinches of lidocaine came in succession.￼
I’ve taken to looking at the fluoroscopy screen when things begin. But this time not even halfway through the insertion of the catheter I close my eyes in pain.￼
“Where does it hurt?!”
“In the back… towards you…” I grunt between my teeth.
￼The thin catheter felt like a pole being jammed through my neck that had met an immovable object:￼ muscle.
Where and how the muscles in my neck had become so strong, I still have no idea￼. But what I did know was that they were not letting that small catheter through. As much as Doc tried to push through, my neck muscles were having none of it.￼￼￼
“We’re not even close to where we need to be…” The frustration and concern palpable in his voice.￼
What had been so different this time than all the other times?
Then it dawned on me: my arm, it was in a new position, slightly askew.
“Can we move my arm?“￼￼￼
Nurse Nury came and stood in front of me, cautioning that she could not move my arm too much so Doc would not lose his place.￼￼￼
“Move it where you need!”
And so I instructed Nurse Nury where to move my arm on my side.
“Ok.” I said.
And Doc commenced. Slow and slowly he advanced the catheter, taking fluoroscope snapshots along the way. All the while checking in to see if I was still in pain or if everything was good. ￼￼￼￼￼￼￼
And just by moving my arm those few inches, the wall of muscle relented and allowed the catheter through.
￼￼CSF out, Spinraza in, the warm liquid spreading within my spinal column, triggering warmth sensation along my skin.
Just like that, ￼we were done.
￼The catheter comes out, a circle Band-Aid goes on covering the route of this miracle, like nothing big didn’t just happen.￼
In the picture, on the right, you can see the shadowy outlines of my teeth.
Around the area with the purple X, is the entry point for the catheter.
On the left within the circle￼, is the end of the catheter slipping through the smallest space between my vertebrae to my spinal column, greeting SMA, ￼giving me more time.
Spinraza no. 11 is down in the books.￼