Colbey Raye had a very long drowsy day yesterday, she did so good going all night and most of the day without eating (I was able to give her a short feeding at 7am!). She got a little grumpy but was consolable with her binkie and napped a lot. We went up to imaging at 12:30pm and they PET was started at 1:15 and the MRI followed. After her tests were done Colbey Raye was super sleepy from the anesthesia and didn’t want to wake up! She was so sweet and kept humphing at us when we tried to wake her, then she finally awoke at 4:20pm with a crooked smile and was back to her happy self after a good feeding and some snuggles.
After we were back in our room Dr. Novotny (the attending neurologist) came to explain the MRI and PET results and he showed me the images. The findings correlated with the previous MRI and multiple EEGs, but there was a little more than we expected. First we went over the MRI, this showed that there is a Dysplasia on the left parietal lobe as was shown on her very first MRI at 6weeks old. They put little green arrows pointing at the affected area (very helpful for me as I’m not the best at reading MRIs 😉!). As we scrolled through and Dr. Novotny explained I noticed a new, second arrow pointing to a different area of the brain. This was something I had feared, this MRI indicates that Colbey Raye has a second area of Dysplasia on the left frontal lobe. The good is that both areas are on the left side of the brain! But now there are more questions about what surgery would entail if Colbey Raye does eventually have surgery.The PET scan revealed that both those affected areas of Colbey Raye’s brain are not using the needed sugars correctly. Now they will take the images of both scans and place them on top of one another or side by side to get better understanding of what they each say in relation with one another. From the EEG results we can safely say that the seizures are all coming from the left brain, and are focal for now, but wether they are coming from both or one of the dysplasia can’t be determined by this type of EEG. Something else new to my knowledge, during Colbey’s EEGs most of her seizures are shorter and focal to the left brain, but what I didn’t know is that during her longer seizures the activity some times will cross over to the right side. I was assured it does not happen often as of now, but as her seizures continue in frequency or length that this could start to happen more often and in result cold eventually cause damage to the right side. The possibility scares me greatly as I know the seizures affect her left brain each time the occur, I do not like knowing her heathy side could potentially be harmed as well!
What’s the Next step?
On Monday all of the neurologists whom are involved in Colbey Raye’s case, the epileptologist and the Neurosurgeon are getting together for a big meeting on what to do next for Colbey. Dr. Novotny said that Colbey Raye will be getting a Functional MRI within the next few weeks, and that will be the next step for now, but as for the next big step that is still to be determined during the meeting Monday. I was told that Colbey Raye is hard to control, because she’s young her brain quickly becomes comfortable with these anti epileptic medications causing them to be less and less effective, so changing them up is an option as time goes on. The keto genic diet is an option but not one we have really gone into detailed conversation about, it has just been mentioned. I know there has been a lot of dancing around as no one wants to give me incorrect information as to what the upcoming months will bring but Dr. Novotny said that next thing is to get the FMRI, and then the next big step after that most likely would be an intracranial EEG, and that it is more of a question about when is the right time/age for Colbey to have these surgical procedures done. Dr Novotny is the first to talk toe about this so I am not setting it in stone by any means! But an intracranial EEG is a surgical procedure where they go in an place EEG leads directly on the brain. This procedure will be able to better pinpoint the exact areas where the seizures are originating from helping the neurosurgeon map out the area needed for resection. If the EEG shows the information needed to do surgery then the resection would take place right then while they are already inside Colbey Raye’s brain, limiting it to only one surgical procedure. It’s been an over load of information this week but all helpful and needed information, I’m going to take it one day at a time, one seizure at a time and one meeting at a time. meanwhile, until they feel Colbey Raye is at the right age, or ready for a surgery we will be working with other options such as new medications to help prevent/control these seizures. I feel like this is just a continuos circle of event and we are going round and round, but I know we will eventually stop spinning and Colbey Raye will either be receiving surgery or there will be a medication to help her stay controlled until she’s ready for surgery. Even with all that is going on we are so blessed that she is developing well and is meeting milestones. I’m praying for patients on my end and knowledge and understanding for the doctors. This journey is still in the beginning, great things are yet to come!
We are discharged and soon will be on the road heading home! Can’t wait to be home with my family, missing my Jaynie girl like crazy!!