Well, it has been a very long time since I have felt inclined to write. I’m not sure why, I have been asked time and time again to start posting to the blog again, yet I never did. Now as we are closing in on a time that will be very difficult for Cam and all of us I decided to start back up for two reasons, first and foremost to keep all of our loyal supporters in the loop and two I’m hoping to find the outlet I used to in writing about things. Overall Cam has been healthy and continues to be a positive happy kid, well now teenager AAGGGHHHH so hard to believe!!!!
As some of you know, and most probably don’t, Cam is scheduled for a very major surgery on May 11th. He will be having a full spinal fusion with instrumentation and possibly multiple osteotomies. I know, a lot of really big overwhelming words, trust me that is how we feel!!! This is a procedure that they have been discussing with us for about two years and about 8 months ago the decision was made that we were at “that” time. From there Cam decided he was ready to go forward with this in hope to alleviate the chronic pain he has been living with and so we began what we thought would be a pretty straight forward process………Not so much!! As I said 8 months ago!!!! I made the call to the surgeon that Cam was ready and lets get the ball rolling, well in true medical fashion things did not progress quickly. This Dr. had not given approval, the dietician left and now the new one doesn’t give consent, etc etc etc. Meanwhile Cam underwent a sleep study and they determined he would greatly benefit from using a bipap machine at night. Let’s just say that news didn’t sit well this him, but can you really blame him. Another piece of equipment, another reason he’s different, another thing to make something as easy as sleeping more uncomfortable, UGH. So on we pressed and scheduled a second sleep study to determine his settings and mask style that works best. We narrowed things down and the following week they delivered everything and we began the first of a few sleepless nights. Anyone that knows Cam knows how stubborn he can be and this was not different. Even though it probably helped him sleep better and wake more rested he would never in a million years admit that!!! After about 3 months we are in a good routine with the mask and machine now and he uses is successfully almost every night 🙂
So back to the surgery with lots of big words……
Basically because of Cameron’s disease and the fact that he sits all day everyday his scoliosis has progressed to a point that his team of doctors feel that we need to address it in a serious manner. The only solution to this is the surgery I mentioned above. At this point the curve in his spine is at a place that it can start affecting his ability to breathe efficiently and his organs to function properly as well as he is living with chronic back pain. No 14 year old should have to live with chronic pain, it is gut wrenching to watch him wince when he moves wrong or not be able to find anywhere comfortable to sit after a long day and worse yet is seeing him miss out on so many things that he enjoys because he is in too much pain to go. We are really hoping that this gives him the relief he deserves, but like everything else there are no guarantees. So the surgery in a nutshell will take anywhere from 8-12 hours (a very long time especially for someone of Cam’s size), they will be starting at his torso with anchor screws and continue up his spine placing a screw at each vertebrae with a metal rod in between all the way to the base of his neck. During the process they will remove chips of bone and place it over the screws in order for the body to recognize a broken bone and begin the healing process. The final result will be a completely solid bone running from his torso to the base of his neck. While this will limit some of his motion we are hoping the benefit of support will outweigh this. The possible osteotomies will come in if they need to cut some of the vertebrae in order to straighten the spine enough to make the surgery successful. The recovery will be long and slow and will take up much of Cam’s summer but he wanted to get it done and be ready for high school.
I will try and keep up with the blog as we go through the process to keep everyone up to date. As you can imagine we are all very emotional and nervous about whats to come. We all deal with things very different but are trying to face this as one and trying to stay strong for each other. I’m sure we will continue to have good days and rough days but will take each one in stride. We thank each one of you for your continued support, love and prayers. We will most certainly need them in the coming months.
Remember, wake up and smile each day and be thankful you were given another opportunity for greatness!!!