Year 3.....continued

Makayla was transferred to a hospital in Orillia to be watched by her developmental paediatrician. We were there for a few days and then finally sent home! A couple of weeks later 911 again! Repetitive story thus far! However this time Mak was diagnosed with a UTI and we were admitted to Mcmaster hospital for another few days this time her bout of unconsciousness was followed by a very livid little monster! Here is where the doc in the emerge said 'why is she taking so many meds' a story I repeated many many times that day to many different doctors. During this stay we met Dr meaney!! that really is his name! However he is the nicest neurologist I have met. It was figured that the amount of muscle relaxant she was on had caused her bladder to retain urine and this causing the infection, than putting the body under so much stress causing it to seize. ( who really knows) Here Mak had her first EEG, which results didn't say much. Dr Meaney listened to me about the jerks Makayla had been experience since birth, he prescribed a new drug to deal directly with this problem something every other dr neglected. So we started weening her off of her anti seizure med and started her on her new ones. Makayla had other plans, she went off her meds cold turkey!

I have witnessed withdrawals from heroin addicts, this was pretty darn similar! Rocking in a chair holding Mak as tightly as I could all night long, night after night, and yes more screaming! I have believed in God all my life but in this moment I questioned everything. A sleep EEG was conducted at sick kids in Toronto, the entire process was  a nightmare all its on. Just imagine pinning this kid down well 50 electrodes are glued to her cute head, now keep her away from pulling on them for the next 12 hours!! The screen in our room told us that Mak had several seizures that night all coinciding with bouts of screaming and jerking but to throw us for a loop the results came back normal. (I have no explanation but something to do with a false positive) I didn't know if I could take it one more minute when suddenly the new meds kicked in!! The twitching subsided and yes people the child slept!!!!!!! Makayla slowly made her way out of an overdosed state and back in the world where hallucinations didn't exist. The tortured child slept and I slept! It wasn't as though she never woke up in the night again because she did regularly, but the pain, the fear and the screaming all disappeared. Thank you Dr meaney!!!!

Makayla was stable for a few months and the specialists had hoped that once she became stable and seizure free her language skills would come back. They didn't come back and so they decided to test her for a variety of rare diseases. Spinal tap number 2. After a team of nurses tried several times to get an IV started to put Makayla under the DR had to give her oral meds that calmed her down because she got so upset at this point that she was able to constrict her veins making it impossible to find a usable spot! Eventually the spinal tap was done. After 8 long weeks of waiting the results showed nothing. Relief but the mystery continues!