Before I continue with this post, I have a disclaimer: This topic will be broken down into a number of articles over a number of weeks. It involves gruesome details of surgical procedures and will be brutally honest from my point of view. I am writing these in real-time. At present, we are in the hospital. Mark is just 12 hours post-op and is finally resting. I am making a point to write these now so that we can share our story in its entirety. This is not to promote anything other than hope.

Today was rough. I don’t mean that I am exhausted and beat from today, although that is also true, it was just long and overwhelming. I knew what this surgery would be like going into it. Let me rephrase, I had a pretty good idea of what to expect. Most of it went according to plan, almost to a T.

We arrived and were promptly placed in our pre-op room. Mark changed into his gown and we met every provider imaginable, including the nursing staff who would be assisting in the Operating Room. It was difficult saying goodbye to him as they wheeled him away, something felt different this time. If we spoke prior to his surgery, I think you heard me say it, but I was hopeful. I was nervous but hopeful. I knew what this surgery could do for him and that brought me so much hope.

The entire Selective Dorsal Rhizotomy surgery was to address the spasticity (or tone, or tightness) in his legs. The goal was to give him more freedom and deliberate movements. The whole reason we decided to go through with this surgery was to give him the best chance to experience all that life has to offer without limitations, pain, or fear of exclusion. In order for this to happen, he had to undergo an intense surgery that involved cutting nerves in his spinal cord to alleviate that pain, tightness, and tension. This is our story. This is our result.

When Mark went back, we made our way to the waiting room and made ourselves comfortable, well… as comfortable as possible. We waited for what felt like forever, but it was about 5 hours, just as they quoted us. We spoke with both surgeons and their synopsis seemed to solidify the hope I had been hanging onto. The surgery was a success, a great success. They managed to cut 59% of nerves on the right leg, and 53% on the left. The goal was to cut between 40-60% of the nerves on the legs to provide optimal results and they nailed it.

The surgery didn’t expose any MAJOR surprises, although we did have an interesting find. If you were to watch Mark walk, he relies heavily on his left leg. He used to wear an AFO brace on it, but when his Physical therapist and Orthotist noticed he uses it to push off, take off, and lead his strides, we all agreed to remove the brace on his left foot. It was thought that perhaps his left leg was not as “involved” or tight as his right leg.

After speaking with Mark’s Neurosurgeon, we found that on the surface his left leg didn’t appear to be severely involved, but looking under the microscope told another story. Mark’s left leg was very much involved. Looking at the nerves showed that they were affected as well. What surprised me most about this was for so long we relied on his left leg to be the stronger leg. We shifted focus to strengthening that right leg and working on bilateral movements, jumping, and longer strides. This might seem like a huge negative or setback, but the beauty of this is that we get to start over with our efforts and now we can adjust our care plan to work with him in a way that will strengthen both legs equally.

After surgery, Mark was heavily sedated and coming off of anesthesia. He slept most of the afternoon and rarely woke up with any sort of complaint. When he finally did wake up with pain, there was very little anyone could do to comfort him. After many tears (from Mark and Myself), and a lot of yelling, Mark was given morphine. This was our saving grace. Mark finally got some much-needed sleep and his pain dwindled away, and his heart rate was lowered drastically.

As our night progressed, Mark would wake up with tears and cry out. The blood pressure cuff scared him, he was running a small post-op fever, and all he wanted was comfort. He kept asking to go home. He wanted his teddy bear and he wanted applesauce. I gave him all the cuddles I could and once he fell back asleep, I mosied my way back to my designated couch and got what little sleep I could.

Mark woke up a number of times throughout the night in pain and uncomfortable. He wanted water and snuggles. He wanted to know he was safe and that everything was going to be okay. As I type this out, it is 4:00 am the next day and he is finally asleep. Here’s to a new day of recovery.