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 7th, 2019 | Day 1 of 5
The struggle is real for Ms. Ava tonight. Weaning off her medication makes her feel off and has caused some nausea. We were up at 5:15 am and have to stay awake until 11:00 pm, the IV is hurting, probably some cabin fever, and now she has to have heart monitors on for the night. There are more cords and wires than ever before. She is fading and wants to sleep but we are down to our last hour of the day. She is a trooper but my heart breaks for her as I am sure it is overwhelming with all of the unexpected and additional tests.
Tomorrow is a new day and I sure am proud of her. She has a lot of new books and toys to help her keep her mind busy and we are grateful to Epilepsy Durham Region for the amazing care package they provided.
Cindy, Ava's Mom
October 8th, 2019 | Day 2 of 5
Yesterday was day 2 for Ms. Ava. Thank goodness for all the hospital volunteers to help her dad and I when we are there separate from one another so that we can go get some food. With Ava not being able to leave the room, it means neither can we and Ava gets bored of us – who can blame her 🤣. The hospital volunteers have been fabulous and she has so much fun with them from playing hang man, go fish and other games.
Ava received another lovely surprise from her family at Epilepsy Durham Region which is soft and cuddly to keep her company.
She had another late night, and worked on some math for school and FaceTimed her friends and family.
The IV is still her nemesis, and causes the most discomfort, except at night as she was hooked up again to the extra monitors for heart and blood pressure along with the EEG electrodes. She was asked to stay up extra late in hopes of have her becoming sleep deprived which will often cause a seizure.
We are so proud of how she is handling it and know it cannot be easy.
When we asked what her favourite part of the hospital stay is? Ava said having the therapy dogs visit.
Meet Benji and Ben💜
Thanks again for your support,
Cindy, Ava's Mom
October 9th, 2019 | Day 3 of 5
Ava has not very much sleep again last night as they are trying to induce a seizure. She finally was able to go to sleep after 12:30am and was woken up at 7:00am.
Yesterday she had a a long visit from her Aunt Emily which was wonderful for everyone. She painted Ava’s toes, played hangman and brought the funniest game called Mad Libs.
During Ava’s visit with her Aunt she also had another visit from a furry friend and they had some long snuggles.
Meet Piper below!
With all the wires Ava needs clothes that zip or button up so she was excited because she received some comfy onesies to keep her cozy.
When asked what are some must haves when coming into the hospital for a long stay she said:
1) Her stuffies (Puzzels, Bibbles, Pixel and her pillow Karina the cat). She will also include her new ones Tundra and Misty.
2) Her green and pink blanket to snuggle along with her handmade blanket from her Aunt Susan to keep her warm.
3) Oreos, salt and vinegar chips and goldfish crackers 💜
4) Apples and oranges (so she can eat the chips 🤣 )
5) Her new favourite game from Epilepsy Durham Region called Crack the Code
7) Her IPhone
8) Comfy clothes
9) Playdough (thanks Cousin Carla)
10) Mad Libs (thanks Aunt Em)
Today she is hoping to another furry friend visit and play Royal High on Rodblox! (Mom is not allowed to say school work even though she has that as well😁)
Thank you everyone for joining us on her journey.
See you tomorrow,
Cindy, Ava's Mom
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
October 11 | Day 5 of 5 and Ava’s home!!
Well, Friday was the last day Ava spent in Sick Kids and she could not wait to get disconnected from the machines, have the IV removed and all the leads taken off.
The nurses and neurologist at Sick Kids were so amazing during her stay that we cannot say enough about how wonderfully she was treated.
She slept in until the nurse brought her medication in and even then, kept falling back asleep as it was an exhausting week for her. She ordered her daily breakfast of pancakes and hash browns and by 10 a.m. had everything removed. She had a quick shower to try to get some of the glue out of her hair and forehead but wanted to explore the outside after being cooped up all week.
She was given one final bravery bead which was a gold heart for being so strong and she now has over 50 in her collection.
As we left, Ava became lightheaded and dizzy. She sat on the floor to rest with some water in the lower lobby of the hospital but with some liquid and salt she was ready to go. This is unfortunately one of Ava’s challenges – even the neurologist said how Ava looks so healthy and normal, no one would think she has epilepsy. This is the stigma of living with an invisible disease.
She was so excited to get home and see her dog Ollie and get some snuggles. She slept 11 hours last night and is singing away this morning and playing.
We cannot thank everyone enough for all their support in keeping her entertained, smiling and for listening to her journey.
Glad to be home where Ms. Ava belongs ❤️💜
Cindy & Ava