I have written two blogs leading up to this day. The process began with the initial consultation and was followed by months of planning and advocating for the procedure and this day to happen. You can read more about the initial stages in blogs 32 and 33.

In the week leading up to the procedure, I was on the phone a lot with the team. First, it was making certain that the date was actually going to work and then it was timing for everything. William’s medications were discussed in detail. Previous procedures and outcomes were evaluated. There were many questions around anesthetic. And then there were all the protocols we needed to follow in order for the procedure to take place. On top of phone calls, there were many emails.

With several changes and adjustments along the way, I was re-arranging schedules for Bear, the girls, for me and for William’s care team. I’d get the plans organized and then with every small change in the plan, I’d have to re-write the plan for everyone else in our home.

What seems like a small adjustment in plans has a domino affect on the family and William. I think our family has become used to it and we all manage. But I do catch myself having expectations of people to understand – but how could they? Mid sentence of trying to explain why something won’t work, I stop and just say, “I’ll make it work.” or, “We’ll be there.” I have learned that I can’t expect people to understand the impact of what seems like a small change.

It was the day before the procedure that we finally settled on all of the details and I was confident everything was going to go smoothly, although I still had the normal nervous questions rolling through my head. Have I missed anything? Are we doing the right thing?

That morning, I had Bonnie come extra early to help us get out of the house with William. I had also arranged for her to get the Beast to school as our departure time was now far too early to drop her off at school on our way. Mimi Pie had slept at the school to accommodate her schedule and Bear was able to arrange coming with me. I had re-schedule my clients and our day was now focused on William.

When we arrived at the hospital we met part of the team for a re-assessment of William’s movement in one area of the hospital. They took measurements of the range of motion in his arms and legs. He wasn’t very happy with all the manipulation but he got through it. We then moved upstairs to where the procedure would take place. Everyone upstairs greeted us with smiles, the room was painted with cute animations and one by one the several members of the team who would be doing the procedure joined us – nurses, anesthesiologist, respiratory technician, assistants and the physiatrist who would be performing the Cryoneurolysis.

Everything and everyone was moving fairly quickly. It felt a bit like a beehive.

William was lightly sedated so an IV could be placed and in true William form, he fought through those meds and needed a little extra help. But that was the end of the fight. With the IV placed, they continued with sedation and the procedure started.

At first, I wasn’t sure if my stomach could handle watching so Bear and I took a little walk, but I couldn’t stay away. When we returned,

we were shown the immediate improvements in William’s muscles in the few areas they had already completed. My mind was blown but I was aware that upon waking, his tone would be back.

This procedure is done with a fairly large needle that is guided by ultrasound. The needle is placed and then adjusted (moved around) to find the nerve. It is then held there while the needle freezes that nerve. Each location takes a few minutes and William had 20 spots done between his arms (biceps and wrists), legs (adductors and hamstrings), and pectoral muscles. These muscles are actually muscle groups so more than one nerve was frozen in each.

William handled sedation well but took quite a long time to wake up which always feels a bit unsettling. We needed to wait for him to be holding good oxygen levels before we could leave which took a few hours. There was a nurse by his side the whole time and finally we were given the all-clear.

We carefully got him dressed as he was covered in bandaids where all the injection points were. He was already starting to bruise and it did look painful but he was happy to get back in his chair and was all smiles getting on the elevator with some mild pain medication on board.

Our whole team was interested to see how this procedure would impact William.

It’s now been a few days and so far the consensus is that physiotherapy is a much easier event. William’s range of motion is improved and we are able to stretch William more effectively. This procedure isn’t a magic fix to William’s cerebral palsy or dystonia. It is a therapy to help lengthen his muscles.

William doesn’t move his body the way the average person does so it is up to us and his team to ensure he gets what he needs to reap the benefits of this therapy – challenge accepted. William’s muscles still tense up uncontrollably, he still requires tone medications and he still requires every support he needed prior to the procedure. But from what I can tell at this point, we will be able to avoid more invasive surgical options for a little bit longer.

Our family is very grateful that this therapy was made accessible to our boy.

This leg of William’s journey living with CP allowed us to meet some beautiful people and we are hopeful and optimistic about the benefits of Cryoneurolysis for William.

We made it through it together and I’m incredibly proud of my son for handling everything he goes through. The smile on his face lets me know that he needs me and continues to trust that I have his best interests at heart. Despite all the hurdles, I think it was worth it.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.