I spent several hours waiting while Mason had surgery. Dr. G came to see me when the surgery was finished. Everything went smoothly. The spinal cord was very tightly tethered. He released it and tested some nerves in his legs to see if there was any function in them. One responded a bit, the other did not. What that means only time will tell. Dr. G hopes Mason will not need another detethering for years, his hope being 10 years, but with all things like this we just cannot predict how long before it happens again and causes nerve problems.
On Tuesday morning Mason was given several medications and one made him throw up everywhere. We had to clean him, the bed, and everything else while keeping him flat. It hurt. Even worse, on day 2 Mason had to get a bandage change because a nurse tried to do his enema and got his bandage wet. It was the worst things I've ever heard from my little man and halfway through one of the three nurses went running for morphine to try and help him get through it.
Thursday Mason spent the morning lounging in bed, working his way back to sitting with the bed being raised. At lunch time he demanded to be allowed in his wheelchair. My tiny dictator! I picked him up and he didn't cry. It was uncomfortable I am sure, but not painful like before.
Finally we went back to his room for cathing/diapering. He did well on the transfer to the bed and it was then that I realized just how big a difference a day can make. He truly felt better. We were heading home.
He also thinks the food at home is way better than hospital food.
Movement and Function
I want to make a quick note here about the results we're seeing so far from surgery.
- At this point Mason is moving both legs at the hips better than before surgery. Its obvious that he's stronger there.
- The hip and foot contractures - the jury is still out. I think his feet have more flexibility/range but it's too early to tell. We will get right back to doing his leg and foot stretches and see what happens while we wait for more appointments with other doctors in the future.
- Mason's sitting balance is off. Considering how many muscles it takes to sit and balance, and that a portion of those were just cut on Monday, this is not surprising. As his back heals we expect he will regain his balance. He also can't sit himself up at the moment, which takes using a lot of back muscles in ways that hurt right now. Again, we expect this will come back as his back heals.
- We have no idea what this surgery has done to Mason's bladder and bowels. We will have some tests done in 3 months to check the bladder, we will continue nightly enemas and watch what happens with his bowel function. Our hope is that things stay the same, that nothing got worse (lost nerve function more). Only time will tell.