Not Spineless

One unexpected advantage of spinal fusion surgery may be that Aulton now has the cleanest and softest sheets in our house. The pain of the surgery made it difficult for him to sit on the toilet and that meant that there were a lot of wet sheets every single morning, for over a week.
In all seriousness, people have supposed that Aulton had the surgery for aesthetic reasons. People have observed that a spine with that kind of curvature is not very fun to look at. As a mother, it is heartbreaking. However, that is not why he had the surgery.
A spine that curved like Aulton's upsets organs. His GI system was severely impacted (no pun intended). The intestines were cramped, which caused serious bowel issues for almost a year and a half. One of his kidneys had shifted to a different place, which probably caused some problems. His ribs (remember - the rib bones are connected to the spine bones) moved over along with his spine. And, the most significant impact was on his lungs. His spine had one small curve at the top, which was trying, in vain, to correct for the curvature on his right side. His right lung became so compressed that it collapsed. This was not discovered before surgery. The lungs were visible in x-rays, but apparently the collapse was not discovered at this time. This abnormality has likely contributed to the obstructive sleep apnea that has worsened over the last several months. As a side note, it was hoped, but not expected,that tonsil and adenoid surgery would solve this sleep issues. The news that his apnea had gotten worse after the surgery was devastating.
In the short term, this is a painful surgery and recovery. Basically, the doctors cut his back, where his spine should be, from the base of his neck to almost hip level. Then, they spread out tendons, tissue and muscle and hold those in place with a spacer. They remove some of the joints, to make the spine more pliable and once they twist and move the spine as close to 0 degrees as possible, they put cadaver bone in the empty spaces, that will fuse the entire spine together. When the spine is at the best possible position, they place a drain at the end of the incision to support the massive amount of blood loss. They sew up the incision and put a dermabond type covering over it. Recovering from spinal fusion is no small feat.
This was not a vain attempt at "fixing" Aulton's appearance. This decision was entirely based on making Aulton's quality of life be the very best it can be.
When, Aulton was moved to recovery, he was sedated and placed on a ventilator. This was a little hard to see, but it kept him from experiencing the extreme pain that a person experiences after such a major surgery. It was amazing to watch his chest moving up and down, in a way it hadn't for years, while the machine breathed for him.
When he was taken off of the ventilator, on Friday, and woken up, it was apparent that he was having some problems with breathing. The doctors and nurses were always trying to get him to cough, to open up his lungs. Aulton does not have a strong cough and maybe never will. He doesn't have the muscles necessary for deep, lung and throat cleansing coughs. So, he would cough a little bit, but he had an oxygen mask on him for the inevitable dips that occurred. He struggled throughout Friday and Saturday.
Saturday night - he stopped breathing.
The code was announced hospital wide and medical staff rushed into the room. He was put on oxygen and whisked back to the ICU, where doctors tried to figure out what had happened. We know some of it was a result of the collapsed lung and there were other theories floating around. He was examined for a chest tube and given another IV. At this point, he had pulled out his central line. He had one removed earlier that day because it had failed. They tried to use the last, of the 3 available, and it failed. A new IV needed to be started.  This was a good time for mama bear to make an appearance. As observed by a fly on the wall, his mother told the nurse that if she didn't know what the f&*# she was doing, to not do it. Mom was assured that the nurse knew how to do the hard sticks. When the nurse blew the vein, she had no choice but to get someone else.
Aulton was very agitated during this entire time. Eventually he calmed down. When he was settled, the parent lounge, on the ICU floor, provides an excellent place to lose it, if you need to do it away from your child.
After this event, he stayed in the ICU and was put on a rigorous respiratory exercise schedule, which involved a lot of suctioning and use of the cough assist machine. His lung started to repair and we moved back to the floor.
Pain management, in the hospital, was pretty tricky. When we got it balanced with dyludad, he developed a sensitivity to it, that made him so itchy he was tearing at his face and chest and couldn't sleep. After a lot of adjustments and trying morphine for some time, we left with oral oxycodine, valium, ibuprofen and tylenol. At this point (19 days out) he is taking a regular dose of tylenol in the morning and the evening.
Doctors said Aulton would start doing his "normal" at 6 weeks. He is already there and it will be 3 weeks tomorrow. I figured it would take quite some time before he could get out of bed and his recliner by himself. He started doing those things yesterday. The washing machine is not constantly in use with his sheets anymore because sitting on the toilet is less painful.
They also said Aulton would need assistance turning in bed, every 2 hours, for 3-4 weeks. He started turning himself the after he came off the ventilator.
His recovery has been miraculous. He still has to attend physical therapy, help his mind adjust to his body not being crooked anymore and relearn some movements. He cannot bend, except at the waist.
People have also questioned why we waited for so long, since his curve was so severe. Again, quality of life. Aulton's rapid growth made his curve advance very quickly. There was nothing that could be done to stop it.  At the initial appointment in May, Dr. White said it could be schedules right away or it could be done when the summer was over. This would give him a little bit more time to grow and he wouldn't miss swimming season. He didn't have to lay in bed over the summer and have his recovery time divided with his sisters. He was able to travel and have a fun summer. Inevitably, the curve got worse, but again, we considered his quality of life. His summer was better than it would have been if it had been preformed in June or July. His recovery has certainly been better with devoted attention, that wouldn't have been possible during the summer.
Hopefully, this post resolves the number of questions that have been posed over the past month.