Spinal Surgery Thoughts and Updates

Isaac had a full MRI and CT Scan back in May, to which the results were what we found to be astounding. Dr. S, his main Orthopedic Surgeon, positioned him in different ways to attempt to detect gross movement in Isaac's spine. We waited and waited on these test results. Finally, we received a call, and the most detailed information that we had was that "There is no gross movement in Isaacs spine. Dr. S is not recommending surgery urgently at this time."

To which we'd internally translated this to mean that Isaac would not need a spinal stabiliation surgery. However, that assumpton was just that, an assumption.

It was the first day of our summer vacation in late June/early July, when we received a call from Dr. S's nurse, letting us know that we'd need to set up a consultation with Neurosurgery and Orthopedics, to discuss the future path for Isaac, and his need for surgery. To say that we were taken aback would be an understatement. For those that have been following Isaac's story from the beginning know that we had been prepared for surgery from the very beginning, but it had always been pushed off. Initially, it was because of weight, then because he was functioning fine, and there were no presenting factors to warrant surgery, and then, after the last course of tests, we thought we'd "made it out of the woods" and were escaping the surgery altogether.

We scheduled our next appointment with Neurology, and Isaac 'performed' for the doctor, and was able to detect hot/cold correctly on his feet 8 out of 10 times. Based on other tests or quizzes the doc gave him, we were told that Isaac would 'likely' have control of his bladder and bowels. HALLELUJA! (Side note - we've had several victories lately in this realm - Isaac asked tonight "I go potty and get a sticker?" - Sure enough, SUCCESS!)

Isaac then had another MRI and CT this fall, and following that, we met with Dr. I from Neurosurgery and Dr. S from Orthopedics, and our course of action was set out before us. We had a very involved "family" meeting with Dr. S and Dr. I, as well as one of Isaac's First Step's providers, Nicole. We learned what we already knew by now. Isaac needed surgery, and it needed to be sooner rather than later. The surgery is now being proposed to be preformed in two steps, rather than one. The first surgery is scheduled to last about 5-6 hours, and involves placing titanium rods on either side of his spine, that will attach to his uppermost rib and down to his pelvis. This is for stabilization, and they will be lengthened each year (which means repeated surgeries). The second surgery, which is currently scheduled for later this spring, and it involves the resection of the spine. This is necessary, as Isaac's spinal column gets very narrow, and makes several turns, and in the same area, his spinal cord is thinned to a few fibers. The goal is for him to maintain the uses that Isaac has today, and to keep him from losing function. It is not out of the realm of possibilities for him to gain functionality, but that is not the goal of the surgery.

So, here we are, the night before surgery number 1. Very thankful, anxious, peaceful, humbled, amazed, prayerful, and many other descriptors.