Today started out beautifully. Both kids were on their best behavior, Rhagan got to school on time, and I got to drink an entire cup of coffee. I should have known better. Things never run that smoothly around here. We love our crazy, hectic life, but it is just that, crazy and hectic. Now to backtrack.
One January 22, 2012, I truly thought my daughter was being called Home. I was trying to mentally prepare myself before having to call my family and friends to tell them Bunny had passed away. She went from pink, to clear, to blue right before my eyes, her seizures wouldn't stop coming, and her oxygen was dropping into the 50's while on two liters. An ambulance picked Bunny up and rushed her to our local ER. They immediately knew they were not equipped to care for her, so the search for an open bed at another hospital began. After several hospitals said they couldn't take her because they were packed with flu patients, one hospital found an open spot. As quickly as we could, we were on the way. While heading to the next hospital, I received a phone call from the paramedic with Bunny. He yelled into the phone, "Does she have a DNR?" I was stunned and didn't respond immediately and he said again, "Ma'am, does she have a DNR?" After what felt like an hour, but only a few seconds, I informed him that she didn't. She does have a DNR, but at any point in time I can pull it, and that's the choice I made in the moment. Bunny was dying and I wanted them to do all that they could to save her. A few seconds later, I saw him look out the window, smile, and give a thumbs up. She was OK. We finally arrived at the hospital and she was stable. Over the next few days, she ran fever, had multiple seizures, and we didn't get any answers. Maybe she just got bored and needed a little excitement. We'll never know for sure. Ironically, that same morning all this began, Buns had a Neurology appointment scheduled in Dallas for a follow up. We obviously couldn't make it, so it was rescheduled for today.
Now to today's appointment. I love going to see Bunny's Neurologist and Epologist. They listen, care, and don't focus on her terminal diagnosis. They see her as a child that deserves a chance to live. We discussed her recent seizure activity, current medications, other new medications that have been approved, and so on. I informed the Neurologist, like I do every time, that I'm open to different options and courses. I want Bunny to have as few seizures as possible, so she can have the chance to thrive. With every seizure, it's like we lose a little piece of Bunny. She used to be able to wave, but now she can't. She used to know two different signs, but now she doesn't. Her seizures hurt her mentally and physically. With her last seizure, she broke a tooth. A tooth! That's hard to sit back and watch. The Neurologist went out to speak with the Epologist to see what would be best for this case of stubborn seizures. When she came back in, I was actually shocked by the decision. First, she suggested that Bunny have another MRI. I am completely fine with that other than the anesthesia, but it's necessary to know what's going on with her brain. Next, she suggested that Bunny be admitted to the hospital for at least a week, but could be longer, for an EMU Phase 1 Study for surgical assessment. Surgical what?? Again, surgical assessment. They want to study Bunny's brain and seizure activity to pinpoint where the seizures are coming from. If they're coming from one specific location, they'd recommend removing the abnormal brain tissue in that area. Brain surgery. Don't even get me started on what could go wrong when imperfect humans operate on brains. The idea sent chills down my spine. Could this be the only thing to help her? Is this what we have to do? Is brain surgery the cure? Once I swallowed the initial thought, I started thinking of the opposite. What if her seizures aren't coming from one location, but many, and we've exhausted all options? What if Bunny never gets to go a day without having a seizure? What if, little by little, we lose her to this nasty, awful, mean thing called Epilepsy?
I have so much to think about and even more to pray about. Right now, I just pray that God will heal Bunny's brain. Lord, please! Make it whole. Reach down, Lord, and take these seizures away. Heal her brain. I know He can, but is that His plan? Lord, what is Your plan? I wish I could know. I believe that my God can heal Bunny from head to toe, and I know He will one day, it just may not happen on earth, and that's the hardest part of it.
