The Riley Report: Cochlear Implant Surgery & Activation

Article Introduction

I’m excited to finally have this article together, so that I can share our excitement about Riley’s cochlear implants! We were all incredibly nervous going in, but the results have been phenomenal thus far!

Riley 2 days post-CI activation, March 2019.
Riley 2 days post-CI activation, March 2019.

Riley has already started using new words, and short phrases. Her physical activity has even increased since her cochlear implants were turned on last week (February 28th, 2019). I want to tell you all about our roller coaster adventure, but it will make a whole lot more sense if you recap the previous Riley Reports, “An Introduction,” and “Cochlear Implants.” (Remember, the best way to stay current on Riley’s medical journey is to follow my posts labeled “The Riley Report!”)

Prepping For Cochlear Implant Surgery

I’ve been away from My Pink JanSport Backpack since before the cochlear implant surgery, and with good reason. I freaked out! A few days before the surgery, I had a major meltdown that I recorded and posted to social media in support of other mamas and daddies in my shoes. (You can watch here, if you feel compelled to.) My nerves got to me, and it severely affected my writing capabilities. Negatively. Our family also had some personal drama to deal with at that time, so it was a lot.

The Insta-announcement of Riley’s cochlear implant surgery date!

Memaw (my mother), met us in Dallas early, to have some fun before the big scary bilateral (both sides) cochlear implant surgery. We visited the Dallas World Aquarium, and had so much fun! Grandpa (Ross’s father) also met us for dinner that night. Having our parents there really meant the world. We didn’t want the chaos of a lot of people, but having one solid support person each was absolutely wonderful. We can never thank them enough for all they did during those three days in Dallas.

In most circumstances, the patient would go in to the hospital the day of their cochlear implant surgery. Then, they would usually be able to go home by that evening (barring complications). Of course, our Little Bear is not a typical case. Because of Riley’s heart condition, she was admitted the night before the surgery. They gave her an IV to ensure we wouldn’t have any issues with dehydration, and monitored her heart rate and oxygen levels.

Time For Cochlear Implant Surgery

A slew of medical professionals were in our room before the sun came up, prepping us all for the day ahead. Riley was taken to her cochlear implant surgery before 8:00 AM. All went well enough that Little Bear was taken to recovery around noon, where I got all of the drugged-up baby snuggles. (I knew I’d need to get my fill, before she woke up enough to ask for Daddy.)

Riley wrapped in head bandages and connected to medical monitors, post cochlear implant surgery.
Riley in the recovery room after cochlear implant surgery, still groggy from anesthesia, and hooked up to a slew of monitors.

Recovery took a little longer than anticipated, as Riley developed a sinus arrhythmia (irregular heart palpitations), and was having trouble keeping liquids down. Everything corrected itself as the anesthesia wore off, which is not uncommon, but it was stressful for all of us. (All three of the Barber Bears were incredibly disgusting and exhausted before we left that hospital, the following day.)

The Barber Bear Family loaded up in the truck, ready to head home after leaving the hospital.

The “In-Between Period”

Just a few days after being home, Riley caught a cold, and we had to take her to the E.R. It was a minor cold that only lasted for two days, but because of the high fever so close to surgery date, we had to make sure there wasn’t an infection, which there wasn’t. We also had to deal with sporadic bloody noses for almost a week, which is also considered normal after cochlear implant surgery.

Tori and Riley in a private ER room, February 2019.
Tori and Riley in a private ER room, February 2019.

There’s a three week recovery period from cochlear implant surgery, in which the devices are not activated. This allows the swelling to go down, and the incision sites to heal. The surgery took away any natural hearing Riley had, so she was completely deaf for this time. She adjusted like a champ, though! Due to her growing ASL (American Sign Language) vocabulary, we were still able to communicate fairly well. She was a little more attached to Ross and me, but nothing of concern happened.

Activating Riley’s Cochlear Implants

Activation Day was not quite the big event I think everyone thought it would be. It was nice to have Riley’s surgeon confirm that she was healing well, and it was amazing to see her instant reaction when the first device was tested. However, it just felt a lot like any other Dallas visit we’ve been to before. (To me, at least.) Things didn’t start getting interesting until we got back home.

Video compilation of testing and activating both of Riley’s cochlear devices!

Riley Bear still loves music!!! I cannot express my gratitude to the powers that be enough for this little miracle. I never knew how important something so simple would be to me as a parent, but I am so relieved. She’s also already been picking up new words and signs, and she might actually try to walk on her own soon! She loves having her “ears” on, and will usually give you a smile when you connect the first magnet.

Riley, female, 21 months, in pajamas, sporting a special headband to hold up her new external cochlear devices.
Riley relaxing with a little Doc McStuffins before bed.

Little Bear definitely gets tired a lot easier now. I think she’s working extra hard to process everything. There’s so much to take in, but she really seems to enjoy it all. (Except maybe eating dinner sometimes, but that’s a whole different article I need to work on.) I’m constantly amazed by my daughter’s ability to persevere through everything that gets thrown at her.

What’s Next?

We will be back in Dallas frequently over the next six months to test the devices. Like the booth testing that we did with Riley’s hearing aids, this will allow the doctor to adjust the settings as necessary, to give Riley the best access possible. After that, we will be able to transfer back to our local audiology team, and should only have to visit them about once a year.

Tori holds up a stuffed koala with a fake cochlear implant device sewn to its head.
A gift to Riley from the Cochlear manufacturer, this is Steve (named after the great Steve Irwin). He is a Barber Bear Now.

Do you have a cochlear implant story?

Tell me about your (or a loved one’s) experience with cochlear implants! Share your activation story or your memories from the cochlear implant surgery itself on Instagram, Twitter, Facebook, or Pinterest! #cochlearimplant #MyPinkJanSportBackpack

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