I just wanted to take a little bit of time out to let everyone know that Perrin has pulled through his surgery very well. For those of you who weren't in the know, Perrin's medical team (which consists of his pediatrician, 2 neurosurgeons, physical therapist, and one orthodist) began to suspect that he had tethered cord syndrome and a series of tests were started.
I think it is important to note here that nothing was ever able to clearly indicate that Perrin was suffering from TCS, but there were indicators from different areas and different people that lead us to believe that surgery was the best option for him. Meva and I both trusted Perrin's medical team, especially his neurosurgeons, that after talking it over we agreed to go through with the procedure.
Medical jargon isn't my strongest language, but I feel I can speak it passably if I am forced to. As it is 3am and I still have work to do, I'll leave the technical aspects for Meva to use as she bedazzles and illuminates you with $75 words, I will talk like an actor who's played a doctor on TV.
Basically Perrin's spinal cord should be free at the bottom, hanging inside the vertebrae and ending before they curve into the tail bone. His wasn't. There was some type of fatty fiber connected to it and pulling it down and stretching it. Think on how it might feel to have your spinal cord continually stretched everyday. That's what he went through. It became much more problematic once he began walking (which in retrospect is amazing) and contributed to his unusual "gait."
So, the medical team only suspects it and wants to cut open his spine and check it out. On Thursday afternoon they made an almost 4 inch incision in his back, removed that pesky "back bone" that was in the way and then opened a flap to reveal the spinal cord and a mass of nerve endings. Using some type of electrical system that is much more complicated than I am smart they identified the "live" nerves and created path to this tethering fiber. Basically they turned my little boy into a living game of operation, DON'T TOUCH THE SIDES!!
Once they cut the fiber, they were able to see an immediate release on tension, similar to pulling your shirt out in front of you and then leaving go. This was confirmation that he did indeed have tethered spinal cord syndrome.
Right now we've spent the last two days with Perrin laying on his stomach and he might have one more such day to go or less. To his credit he hasn't tried to wriggle around or move too much because it causes quite a bit of pain to him. Even picking him up to hold him on my chest gives him discomfort. I believe the plan is for him to begin working on sitting and then walking. For me the hardest part was just watching him lay there and not want to move with a tired and kind of sad look in his eyes. But he's such a tough kid that it didn't last long and he was laughing and giggling, playing peek-a-boo, and trying to punch my head off. He was also very interactive and talkative, which I think shows how strong he really is and that poking around in his head and his spine aren't enough to keep him down!
As of Friday night there was no definitive word on when he might be coming home. Current thinking is anywhere between Sunday and Tuesday, so I would imagine that alot has to due with how he responds tomorrow.
I just want to say that I am floored with all the kind and wonderful words that so many people kept Perrin and us in their thoughts and prayers. That meant a great deal to both Meva and I.
Hopefully tomorrow I or Sunday Meva and I will bring in another update and some photos from the hospital. But for now, enjoy the shots I have put throughout this post of our Man of the Hour. He doesn't know it yet, but he is already my hero, even if he doesn't always wear pants.
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