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Tuesday, February 19, 2013

Our Story part 5

By day two of this hospital stay, we were surrounded by the Neurosurgery Team. They would be taking over his care from here on out. He was no longer a candidate for therapy by medication alone, he was being diagnosed with Medically Refractory Epilepsy. The seizures were sapping my boy of strength, energy and the ability to do anything on his own. The surgery we fought so hard now looked to be the 'only way'. The head of the department and Neurosurgery stopped almost all of his meds. Pretty much cold turkey.

We didn't see the seizures worsen, rather we saw the old Bryce coming back, but still seizing. After a few days he was finally able to walk around and take care of himself again. We were thankful. We were also scared because we knew the surgery that we had fought so hard against, was being scheduled. They were calling him an emergency case and threatened that the longer it took to get him 'on the table', the worse the brain damage and paralysis could be. I was so scared. Deep in my heart I knew God could turn this around, but maybe surgery was the path we had to walk. I called out to Him often, "God-you can stop these surgeries at any time with only a word. If this is the wrong thing for my son, please stop this. Please stop them. I don't know what to do. I'm scared."

Meetings were called with Neurology and Neurosurgery. Opinions from other Neurologists were presented. They were working with a case that they had never seen, nor could find any medical literature about. Specialists were called for advice all over. No one knew what to do. As we sat in that meeting going over scans, test results, and models of the brain and surgical techniques, I was scared but still believing that at any moment, God could turn this around. A sense of peace enveloped me. Everyone had an opinion as to what was wrong with him and what therapies to try. It didn't help that a key test we needed, could not properly be performed as Bryce was seizing far too often to sit still long enough to get the test done. They would proceed by using the other tests that 'gave them an idea' of where the problem area was. We were assured by the head doctor that he knew WITHOUT A DOUBT what was wrong and that they could 'fix' it. Our soon to be primary Neurologist disagreed. She was a research doctor and wasn't as inclined to label him with what they were labeling him with. We asked for another test. The head Neurologist was very angry and said that all we would do is hurt Bryce by performing this test and that if it was his child, he wouldn't do it. He KNEW what was wrong and he was sure they could get to it. Our primary Neurologist agreed to let us try one more treatment, in conjunction with a treatment an earlier Neurologist had performed.

About this time, flu season hit. The Neurosurgeon wanted Bryce out of the hospital for fear of him catching something--he was on meds that weakened his immune system and ONE cold would stop surgery. They had already rushed scheduling him in, bumping him in front of many others and said that if they could, they would bump more or put him in place of a cancellation. We had two weeks to take him home and keep him well. We were given masks and told to limit visits and him leaving the home. We were return for an official Neurosurgery consult. Home we went.

We attended that Neurosurgery consult. Bryce was so snowed with all of the medicines that he slept through most of it and to this day, all he remembers is being on a high floor and looking down. The news wasn't good. They weren't able to 100% isolate the trouble spot and this treatment 'may' provide up to an 85% cure rate. Or, it could cause permanent damage to his brain. He also informed us that he could take out healthy tissue instead of just the trouble spot. This surgeon was the best of the best. He had performed EVERY brain surgery at this hospital, except two, in the last three years there. He would have a two part surgery, one on Monday to place electrodes directly on his brain, then the final on Friday to 'remove' the trouble spot-the lesion that kept showing up on MRI but was tricky to isolate. He would be in ICU for a couple days, then off to the Neuro monitoring unit. The length of stay would depend upon how he did in surgery and what to do if any damage did occur--physical/occupational/speech therapy. This area was in a bad spot--right around both motor and speech areas. He could permanently loose his speech. Still, I said the same prayer to God again, "You can stop this with just a word. Please, I am so scared."

We took Bryce home, preparing for the worst but hoping for the best. He was still constantly seizing. One night, (his dad worked night shift and often the 4 kiddos crashed in our room while we watched rented movies), we were watching a movie. Miley Cyrus' "The Climb" came on and I notice Bryce raising his weak, almost paralyzed arm in the air singing. I noticed him sitting up watching the movie. Could it be? I glanced at the clock--it had been 6 hours since I 'observed' a seizure!! How did I not notice that?!? The next day, the same thing. I immediately called the Neurology nurse and informed her what I saw. I DID NOT want Bryce going into surgery until they could perform that final MRI that they needed to properly isolate the spot. I was hopeful....very hopeful.........

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