Colbey Raye’s story is now posted on the blog. It’s is under the menu link at the top of the page. There was a lot to say and between rereading, reliving, and getting all of the facts straight it was quite a task for me. Every time I went to finish it I had to read it from the top, and would remember some important detail, by the end I was just ready for it to be done and posted. The last month has been the craziest, I know the first few weeks were terrifying and hard but for some reason this last month and a half has been harder on me than the beginning. The begging was hardest on Josh. When Colbey Raye first started seizing things were bad and scary, once she was diagnosed a light shined over the situation and I was so hopeful as she started being seizure free. Knowing the cause helped me so much, but as things started getting worse, and the seizures got harder and harder to control it was hard to see the positive. Every time things got worse I’d bring up surgery, there was always something else the doctors wanted to try first, nothing has helped and still Colbey Raye’s seizures continue to worsen. Don’t get me wrong, surgery scares Josh and I, but we know that the outcome could help her so much more than anything else. I do not see any other option at this point and finally Colbey Raye’s doctors agree. we talked last Tuesday and for the first time Dr. Ko mentioned brain surgery as their recommended plan of action.
On Thursday Colbey Raye had a really hard day, we had to give her a bolus of Phenobarbital and it did not help her all to much. While on the phone again with doctor Ko she apologized for the slow going proses but reassured me that as soon as the tests were completed and the results are in Colbey Raye will be getting surgery very quickly, most likely before Christmas. We are also on a cancelation list for the MRI and PET scan but because they want to run these back to back we most likely won’t be able to get in early. I know these test are only 3 weeks alway but when your baby is seizing and turning grey/blue over 15 times a day (not counting seizures during the night time hours) 3 weeks feels like an eternity.
Friday was better than Thursday but Saturday Colbey Raye needed another phenobarb bolus. Sunday and Monday were hard too. Each day is similar, Colbey Raye has at least 1 seizure (usually 2 or 3) every time she falls asleep, and randomly during play time and feelings she will have a seizure and then be very disoriented and usually goes to sleep for another nap. Her seizures are usually a minute to a minute and a half but sometime longer, and she cannot focus for a little while after they are over. The more frequently they come the more worried I am about the lack of oxygen going to her brain. This morning she’s already had 5 seizures and the last was a 4 minute and 48second one. I gave her the rescue medication and she is sleeping very soundly now
I am a little bit frustrated in this situation. Because Colbey Raye is already on the max dose of all four medications for her size and dr. Kuratani does not want to add any more. In order to change the medications she would need to slowly come off of one while they added another causing her to be on 5 at one time. I know it’s an option but so far not one the doctors are considering. I have a call into Colbey Raye’s neurologist to ask about other options for the next 3 weeks. Maybe some oxygen to supplement her with during seizures and a pulse-ox machine to use so I can keep an eye on her stats, especially during the night when I’m not as aware of her seizures. Hopefully I will hear from Dr. Ko soon and we will have a better seizure plan for the next 3 weeks.