First, it was seeing him in the Pediatric ICU. His head was bandaged, his eyes were swollen. It was enough to break your heart.
He wasn't in there long, though. He got transferred to a room, where I was at his beck and call. His dad and I alternated nights staying overnight. But I stayed all day, every day. Fortunately, I was a SAHM at that time. I have no idea how I would've managed, otherwise.
I got him iced sweet tea from Wendy's downstairs, his only request. I also bought him a stuffed animal from the gift shop every day. He still has some of them.
Then it was time to take him home. We were very ready!
But what I wasn't prepared for was his anger.
I now know that it's common for post-op Neurosurgery patients. But at the time, I had no idea what was going on. I just knew I had a mad, sick kid who I was practically doing cartwheels to please, and nothing was working.
I remember finally breaking down and saying to him, "If they could've done this surgery to me TEN TIMES instead of doing it to you one time, I'd have gladly let them do that. You know that we only agreed to this surgery to make you well, to make you feel better." Somehow, that seemed to help a little. Or maybe it was just time for that anger phase to end. But it did get better.
After a few weeks at home, he was sent back to school. It didn't bother him a bit that he had a "zipper" scar on the back of his head. He had no problem telling his friends at school all about it. He had a few restrictions, obviously, but overall could do his normal things. Which terrified me!
The initial MRI results were wonderfully good. Chiari isn't something that can ever be 'cured', but the doctor was very confident that the surgery was extremely successful. He thought there was a good chance that T-bone would never have any further problems with Chiari.
I was surprised, but hopeful. His surgeon was awesome, the hospital is awesome; people come from all over the country to be treated here.
So, why couldn't this Chiari nightmare be over for us?
to be continued...