Hiiiiiiiiii! My name is Ava and I am an Epilepsy Durham Region Youth Ambassador (you can see some of my work on my very own ambassador page here). I am 10 years old and am excited for you to hear about my Neurology Epilepsy Monitoring Unit (EMU) 5 day hospital stay! This EMU visit will help doctors and me and my family understand more about my seizures. I hope you enjoy discovering epilepsy through my journey!
October 10th, 2019 | Day 4 of 5
Today is day 4 and Ava is extremely tired as there was one last attempt to sleep deprive her in order to induce a seizure. She stayed up into the early morning and was woken up after a few hours sleep.
Some of the questions Ava gets asked are why is she in the hospital for 5 days, why do the doctors want her to be sleep deprived, what kinds of tests and monitors is she having?
Having epilepsy, it is so important to have an understanding as to where the seizures are happening in her brain and if there have been any changes over the year(s). Having all of the information collected at the Epilepsy Monitoring Unit (EMU) helps the neurologists understand where the activity is located in the brain and type of epilepsy. This way they can provide a treatment plan from what types of medication will work best, to how much of each medication she should take. For some, and EMU visit can lead to discussions on whether surgery is an option, but not in Ava’s case.
For this hospital stay Ava has the standard EEG which is all the leads you see attached from her head into the machine in the room, an IV port in case she requires recovery medication, heart monitors at night as well as an oxygen and blood pressure sensor.
Today Ava received a very thoughtful gift from one of our Epilepsy Durham Region moms, Danica. Danica made a special visit all the way from Durham Region to surprise Ava with some beautiful slipper socks as well as a stunning owl necklace. We are amazed at the community and connection Epilepsy Durham Region has made. The support system is not only for the parents but for those living with epilepsy like Ava who have built friendships and became confident about their condition to become epilepsy ambassadors.
Ava also received a visit from her godmother, Rana who brought her favourite snacks (salt and vinegar chips) and played some more hang man with Ava (and I think promised to take her shopping🤣).
Tonight, Ava was able to go to sleep earlier and has started back up with her medication.
A couple bright spots in her day were seeing the pictures from the DRPS K-9 calendar launch AND listening to her friend Terry Johnston at CKDO radio interview her dad about her journey and the launch of the calendars.
We have one final blog before we leave, so please stay tuned!
Cindy & Ava