Our trips are rapidly winding down to the surgery date, a little too rapidly for our comfort in many ways, but we are winding down on pre-surgery appointments (until/when they add more). This week was important as we are seeing both the surgeon and anesthesia and doing pre-testing such as EKG, blood work, and fresh x-rays.

Today, Tuesday, we went in for the EKG (results in a week), blood work (par for the course for him), and new spine x-rays. The x-rays (scans to come when I get home, this camera picture will have to suffice until then) showed an increase in the twist and the curve since February, not too surprising. Unfortunately, some bending and stretching x-rays show the curve as being pretty inflexible and Dr. C. doesn’t feel we’ll be able to straighten him out too much and that the goal of the surgery would now be to stabilize and stop the curving. Obviously they won’t know exactly what they are dealing with until they are in and working on him, but we can’t really expect him to come out with a straight spine. This is discouraging not just because of the straightness factor, but also discouraging for the hope that if we could untwist and straighten the spine significantly that it might have a positive impact on his respiratory problems. Also because of the likely inflexible curve, they will probably be clipping his ribs on the right to allow some give and adjustment of the hump on his back that will allow bone to regrow smoother. Because of this and bone density issues he’ll likely wear a brace (not really a brace as he can’t be restricted, but more of a form that will just help the bone heal in place) for 6 weeks after and then for less hours for another 6 weeks or so.

Regardless, we feel confident that Dr. C will do everything in his power to optimize him to the fullest and to do everything they can do to safely get him through the spine fusion. We went ove a lot of the “what to expect” in terms of time (7 hours are booked), pre-care, what to expect after surgery: he will go directly to ICU because of his various “complications” and likely stay there a bit longer than most, he will have two chest tubes placed to help prevent lung collapse which will stay in “as long as they need to”, a pain management team will start with us at the beginning of the day before surgery and work with us throughout the healing process to keep him comfortable. Long term follow up will be 6 weeks, 3 mo, 6 mo, 1 year, and then yearly for 5 years.

Again, I know some of this isn’t of interest to everyone, it’s just a way for me to keep information clear and have it available for those who do We’ve all been cycling through a lot of stress and anxiety and coming up with ways to deal with it all better–we are lucky to have each other to lean on along with our families and friends and all the people around us who care about the amazing young man that is our son, brother, grandson, nephew, cousin, friend, etc.