Neurosurgeon Appointment

Finding a day that works for a trip to Vancouver is only the first hurdle. Trying to align the day, appointment time, ferries, siblings’ schedules, Bear’s work schedule and staff schedule, isn’t simple and for this one appointment it took about two months to get confirmed with all the adjustments and changes.

Thinking back on all the appointments for William, I remember feeling an obligation to say, “yes” to every appointment no matter how inconvenient the time.

I’d set them and never change them or miss them. I remember feeling like they were somehow doing me a favour by even seeing him or that I didn’t want to inconvenience them.

These days, I don’t think twice about responding with, “that time won’t work” or, “can you give me a few other options for appointment times, please?” I’ve realized that any appointment creates discomfort and upheaval in William’s world so it may as well be the most ideal time I can find for him – they aren’t ever going to give me a time that is inconvenient for them.

Once the day was set, my brain runs through every second of being away from the house for the day with William. Everything from the race to get him out of the house, making sure we don’t forget any one of the million things we need, how we are going to accommodate his bathroom needs to hoping batteries don’t die and keeping him entertained and comfortable for 14 hours in his chair and on the road.

And the weight of this particular appointment was heavy – I knew things like a baclofen pump, selective dorsal rhizotomy, and deep brain stimulation were on the agenda.

After surviving the two hour ferry trip with William’s loud story telling, Darth Vader breathing and the concerned looks on peoples’ faces, we relish in a relatively quiet van ride to the hospital.

I’m well aware that we are a bit of a circus and that people are curious. I’m ok with the curiosity but it’s also exhausting feeling like I’m on parade all day.

Although I’ve prepared for this appointment for months and done my research, I review the details and my questions so that I can execute with precision during the appointment. My goal was to have a complete understanding of the options and their impacts on spasticity and dystonia – William has both and the interventions can have different impacts on each of them depending on how he progresses over the next few years.

It’s my job to understand the options, understand William, have enough knowledge to assess William and know when additional interventions are needed.

When we arrived, my heart immediately calmed with the unforeseen presence of my favourite nurse practitioner. She took a new position last year and I’ve missed her since she left.

She gave me a big hug and stayed for the whole appointment – quietly supporting me without even knowing it.

The Neurosurgeon was amazing – what a guy! He asked me questions and actually listened to my responses. He took time to evaluate William and hear what I had said in order to deliver the information in a way that was specific to Will. He answered all my questions and supported my gut feelings by putting science with what I experience with William. They did not rush the appointment and there was a general feeling of care and compassion for what William and our family have faced and will face in the future.

I left feeling somewhat optimistic and relieved that we are on a good path at the moment. But it didn’t take long for the realities to sink in.

You know when you replay things and then the picture of what you are actually dealing with becomes more vivid. Well, that happened after this appointment. The post appointment processing definitely made my eyes well up a few times.

This little boy’s life is a long road and is full of unknowns and what ifs.

I can only hope that packing my tool kit with as much information as possible, continuing to prioritize his therapies and managing his comfort now, will make what’s ahead a little easier on all of us but most importantly, William – challenge accepted!