A little recap:
First I have to mention that while in the ER Sunday afternoon the rescue medication Ativan was brought up, I informed the doctors that Colbey Raye has a very hard time with that specific rescue med and I didn’t want her on it. I thought my request was listened to, but once admitted to our room the nurses came saying that a small dose of Ativan was to be given now, and then again around noon the next day. They tried to reassure me that the dose was so much smaller than a typical rescue dose it shouldn’t affect Colbey Raye the same. She received the dose around 8pm went to sleep around 10:30 and was up screaming by midnight, starting the night of with a bang! She cried and cried for over 2 hours, finally I was able to rock her back to sleep. 3am rolls around and up again screaming again for over 2 hours, she was confused uncomfortable and not handling this oh so small dose well at all. Back asleep for about 2.5 hours and up at 7:30am to start her day, her cranky, grumpy, tired day :(. Yesterday was a tough day all around. She started the morning off with 2 seizures, desatting to 62 and remaining there for a good 20seconds before slowly making her way back up to the upper 90’s. She went right to sleep after and slept good for a little while. I made it clear this time to her doctors that I did not want her on Ativan and there must be some other option. After seeing her grumpy, unconsolable attitude they listened and changed the order and now she will get Dilantin in the event that she continues to have seizures! Still having the Ativan her system for the remainder of the day Colbey Raye was upset, confused, grumpy and the only way to calm her down was tight snuggles and a lot of nursing. She had 4 more seizures yesterday afternoon/evening, desating during most but none as bad as the first that morning. She received 2 doses of Dilantin and that helped her get through the night peacefully without any more seizures.
Today has been a much better day! Colbey Raye received a 1 hour EEG and has slept most of the day, and is in a much better mood! She’s giving smiles and flirts all around even though she is a bit sleepy. She just had her first seizure of the day desating 79, it was a hard seizure and she went right to sleep after.
As for a plan? It is still in the works, but Colbey Raye’s case was presented at the epileptic surgery conference yesterday, I am still waiting to hear from the epilepsy specialist on what all was discussed and what plan of action they have decided to take but I’ve heard a little. From my brief discussion with one of the neurologists this morning it is my understanding that we will be adding a 4th anti epileptic medication, Lacosamide, to Colbey Raye’s maintenance with the hopes that once this episode fades we will remove one of the other 3 she is currently on. This is not a very comfortable decision for me, I’m not a big fan of loading her up on more medication, and I know some of the doctors feel like staying away from surgery but I feel surgery is the best option to get Colbey Raye’s seizure better controlled. I want Colbey to be seizure free, but I don’t want her on so much medication that she is missing out on life experiences, she is quite sleepy and tired as it is. Maybe I am crazy for viewing it this way? But when Weighing the options here, surgery will leave her will less mobility but once she is seizure free she will begin to learn and compensate for the areas she’s not as strong in. If she has surgery earlier then her recovery is quicker and her body will learn better coping skills. Without another surgery Colbey Raye will continue to be on an absurd amount of medications, she most likely will continue to have seizure outbreaks causing set backs in her development time after time. The seizures will continue to affect her development and could potentially set her back more in the event they happen more often. Surgery is always a scary thought, a tough choice to make for your sweet tiny baby, but to raise her quality of life for years to come? I do believe it would, and I do believe it’s the route I would choose to take.
A little recap: