We stopped along the way home for lunch. Over lunch we tried to avoid “the” topic by talking about trivial things, things to take our mind off the pain, but then it became too much. We fell silent and I finally asked “What do you think?”
Chase broke.
I broke.
We both cried.
We couldn’t do anything but cry and look at our precious Cannon. To think of what he would have to endure just to be made right, just to allow him to continue to grow and allow him the best possible future. It was up to us. We prayed and begged for guidance, guidance to give us clear answers, to guide us in the right direction, to give us clarity so we could see what we should do.
We talked about it for the entire three hour drive back home. We got nowhere with our discussion really, except for the fact that we needed another opinion. We wanted another choice, to make sure, to see all options, to hope that there would be something better, something less traumatic, something less awful.
We came home and I didn’t know where to begin.
I became obsessed.
I could not spend enough time on the computer researching and reading all about treatments, options and other people’s journeys through craniosynostosis. I spent every spare moment, every evening late into the night and often early morning hours trying to find as much as I could about craniosynostosis. I would cry so hard reading through it all. The tears might have been from the exhaustion but I also felt a connection with every family, every baby because all I could do was picture Cannon. Each story, I watched innocent babies with misshapen heads requiring surgery and going through the experiences like champs all the while my heart broke. I could not spend enough minutes, hours, days reading through all of information.
A week passed.
I called our pediatrician’s office, we had switched the boys to another doctor within the office who had seen Cannon since birth and who we had connected with when Chandler had been treated by her. I needed an advocate, I needed advice, I needed someone to give us hope. She was out of the office until Wednesday, but I could not wait.
I remembered.
The first nurse, she told us there were options. She told us there was someone there in KC who could perform the surgery endoscopically. I remembered her name, so I searched for her through all the paperwork but she wasn’t there. I searched online for the surgeon that performed the surgery endoscopically. I found him, but I needed a referral, I needed a way to get an appointment and fast. Supposedly online, the endoscopic treatment had to be performed prior to five months of age but preferably earlier; as early as possible. Cannon was three months old. I tried to call the first surgeon’s office to seek out the first nurse we spoke with. I had to leave a message with the only nurse’s number on the paperwork but I got nowhere except I was told to “Enjoy my baby. I needed to relax and just enjoy our time.”
I was shocked.
I did enjoy my baby, I enjoyed every moment, I loved my baby, I was his advocate, it was my job to protect and provide for Cannon and I was doing my absolute best, but this meant that I needed to research absolutely every option and avenue possible.
I was also informed on my voicemail that I would not hear from the scheduler for at least another four months or so, so again I just needed to relax.
I was appalled.
We could not wait.
I didn’t know what to do.
So, I decided that I would just call the main office and ask for the first nurse we spoke with by name. It worked! I spoke with her for almost an hour. I shared all my worries, concerns and questions. I felt a peace and calm and finally I felt as though I could see clearly to get where we had hoped. I told her how we were hoping for an appointment with the neurosurgeon, but we needed one tomorrow, well actually we needed one yesterday but that was not possible. She spoke with a doctor from the office about my concerns. They thought it would still be possible to perform the surgery endoscopically. She scheduled an appointment for the following Monday, only three days away!
We were ecstatic!
We felt relief!
We felt hope!
