Well, we gave the go-ahead to Oliver’s surgical team to schedule his Baclofen Pump placement procedure.
Ever since I sent the email I’ve been consumed with anxiety and second-guesses. I know he’s having to work so hard now to fight the dystonia and spasticity. I hear him gasping for air because he is writhing so hard to one side that he’s literally cutting off his airflow.
I know it’s time to do something more aggressive to manage his condition. But making the decision to have your child undergo a major medical operation that carries with it a 5-10% chance of infection that could lead to Meningitis, is a truly terrible thing to have to do.
At the same time, I know that doing nothing is also a decision.
I say to myself, maybe once he stops growing, the dystonia and spasticity will get better…. But I know that isn’t likely. He’s struggled with these conditions all his life. It was just easier to manage them when he was small.
Now his feet and ankles are becoming more deformed as the dystonia takes its toll on his body. His oral Baclofen seems to be about as effective as water at controlling it.
We can no longer get his AFOs on. This means that he isn’t able to stand flat-footed or bare his weight like he used to, which not only affects his hip dysplasia but also his ability to move around the world in his gait trainer.
His left arm gets stuck over and over again behind his back. We now need a brace for that too.
I can see the patterns of scoliosis starting to appear… the way he constantly shifts his rib cage to the side opposite his hips. Some days he is unable to eat because the dystonia consumes his whole body and he can’t coordinate the muscles to open his mouth for a bite. It’s like he’s stuck in a pergatory of dysfunctional movements and it’s unbelievably painful to watch and more importantly, painful for him to experience.
I KNOW it’s time to do something.
But still I question… maybe there’s a better medication… the herbalist in me so badly wants CBD, skullcap or essential oils to be the answer 🤦♀️ But they’re not.
Then there are the what-ifs..
What if he’s the 5-10%? What if this doesn’t go well for him? What if that hockey puck sized implant rubs on his ribs or hip bones and causes more pain than he is experiencing now. What if we are making the wrong decision?
This last question is a constant struggle in my life as Oliver’s mom.
Being forced over and over again to choose between two sub optimal options is, to put it mildly, a real challenge. Do I cut my son’s body open with two huge incisions, shove a hockey puck in there and implant a tube into his cervical vertebrae? Or, do we increase his oral drugs to a level that fully sedates his body but also fully sedates his mind and spirit? What wonderful choices.
But although I’d rather not make the choice, I am very thankful that we do have one. Because in much of the world, there is not access to this level of care. We are lucky to have this as an option.
Although there are always risks, we are going into this decision with our eyes wide open, having asked every question we can think of and preparing as best we can for this next step on our journey.
I’m doing my best to focus on the quality of life he stands to gain from this surgery and continuously reminding myself that, even if this doesn’t turn out well, we are making the best decision with the knowledge we have in this moment.
This is the mantra I’ve been repeating to myself in the wee hours of the morning when the worry consumes my brain, and just before I roll over and surrender to the sleeping pills at my bedside. Peace of mind and sanity in this high-stakes moment of our life are found in a tiny pharmaceutical pill for me right now.. and you know what? That’s ok too.
Because this journey is a lot. The worries are endless. The decisions are heavy. And sometimes, no matter how much mindfulness and meditative mind you practice, you just need a little help to get through.
Sweet dreams everybody. ✌️