It has begun!

The surgery went very well on Wednesday. They had scheduled me to come in at 3:30, but they called at 12:30 to say they could take me as soon as I was able to get there. So, mom and dad and I left the house at 1:00 pm, and from there everything felt like it went so swiftly, I wonder now if it was just a dream.

The anesthesiology team was remarkable. After my pre-op appointment on Monday, they worked to put together some creative "plans A, B, and C" to ensure the smoothest and least traumatic scenario possible for my intubation and positioning. The surgeon told my parents afterward that because of the curve and twist of my spine, he put the shunt on the left side, and while it took longer than he anticipated (about two hours), he felt confident that it was secure and well-placed. I have a two-inch vertical incision with staples that will be removed in two weeks. They were able to take me off the ventilator before they moved me from the OR to the ICU.  It was 6:15 pm when I remember waking up in ICU, just at the radiologist came to get an x-ray of my back. I got moved into my own room about 7:00. The doctors wanted to keep me overnight for observation, and there was talk that I might receive the first dose of Spinraza the next day before being discharged.

For the first couple hours in my room, I coughed quite a bit - my throat was irritated from the tube, and I had a lot of secretion in my throat and chest that I was having trouble clearing because of the pain and exhaustion. But a respiratory therapist came in and gave me a treatment, and then used a cough assist machine with me (such a life saver!), and after that I had no respiratory issues at all - the nurse even took me off the little annoying oxygen tube in the nose before I went to sleep! Praise God, the thing I was concerned about most ended up being no problem.

I did apparently bite my tongue during the procedure, and have the teeth marks to prove it, and my right hip is pretty sore from being stretched out while I was on my stomach, but these were so minor, I continued to praise God. Mom stayed with me overnight, and she played my music and read to me when I couldn't sleep. The nurses were very kind and helpful.

The next morning (yesterday), the surgeon came in and said everything looked good. Then my neurologist came to check on me, and we agreed to go ahead and administer my first dose. With the surgeon's help to know exactly where to put the needle, she was successful, and in less than two minutes, it was done! One hour later I was discharged, and I arrived home again at 1:00 pm.

The loading period for Spinraza is four doses in eight weeks, so I will go in again on Aug. 17 for dose #2. I don't know if I'll notice any difference in these next few weeks, but I plan to journal regularly about it all. My neurologist said that as far as she is aware, there are few hospitals around the country that are treating SMA Type 2 adult patients with spinal fusions. I am unaware of anyone else like me right now. Kevan said that one of his friends called me "Neil freakin' Armstrong," which made me laugh, but I do hope that what I'm experiencing will help to make this possible for others.