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Nanaki, Can You Hear Me?

PARDEEP SINGH NAGRA

The summer was going well and Nanaki still had a list of activities and things she wanted to do. Planning and making lists are her favourite pastime. 

Then things got tricky and busy. Nanaki lost the remaining residual natural hearing that she had left. 

A series of audiology visits to confirm the loss of hearing were followed with a lot more hospital visits to meet with Cochlear doctors, Audiology specialists, Social Workers, Hearing Aid experts. Sandwiched between balance tests were MRI’s.

They said they wanted to make sure Nanaki was ready. She would also need to understand what is going on and would have some say in the surgery which, after all, was an elective procedure.

With a boogie board in hand, the social worker attempts to “talk” to Nanaki, but before the social workers even starts the questioning, Nanaki begins. She declares that hearing is over-rated, since many kids were born without hearing and they are fine in their lives, aren’t they. Why go through surgery and stuff?  We worry too much. If people don’t know about cancer, it is O.K., otherwise they get scared and their family and friends also worry once they know about it.

What do you know about Cochlear implant surgery, asks the social worker. Nanaki rhymes off the encyclopedia version of it and then eloquently and concludes by describing the Cochlear equipment like a beautiful flower that has a butterfly attached to it.

Do you watch the TV show ‘Bones‘, Nanaki asks the social worker.  It doesn’t help that Nanaki loves and is addicted to the American comedy series, and has is a self-appointed Special Agent. She starts describing various episodes of the show.

You know, I like to talk. I am a chatterbox, you know, exclaims Nanaki. 

I can’t wait for the first day of school, she adds. I already have my school supplies but I would like to get some more. Then: you know my birthday is coming up in September, I have to plan for that as well.

A few more questions from the social worker and Nanaki has had enough, any more talking will only get her closer to accepting Cochlears in her mind and Nanaki does not want to have anything to do with that.

It has been challenging, to say the least, leading up to the surgery date with all the appointments, missed school days, and the hurdles (for us) over communication. Also, it doesn’t help that Nanaki is constantly going from being
comfortable with the surgery to having nothing to do with it. Sometimes daily, and sometimes weekly. 

Nanaki, in her ever-ready planning mode, even made a grave marker / headstone and put it on the living room shelf. It read: “In Loving Memory of Our Daughter Nanaki Kaur Nagra 2004-2015 …”.

Just in case, she says.

Well, the surgery day for Nanaki’s Cochlear implants had arrived and we were at the Hospital for Sick Kids in Toronto just before 6 am to sign in and register and go through the pre-operation routine. 

Nanaki had brought her whole house with her, or so it seemed … more than a handful of her stuffy friends complete with accessories. And letters from all her classmates. It didn’t help when we found out later that my Dad was carrying around an improvised supersize Boogie Board (a large dry-erase board).  Mom, Dad and Nanaki had their hands full just lugging the stuff around as we moved through various stations. 

I don’t want to have surgery, became Nanaki’s mantra and every attempt by us to convince her it is ok and everything will be ok only was met with an ever louder rebuttal.

Things then started to get intense; Nanaki refused to change into her operating clothes, she then decided to rip off her pre-IV patches on the tops of her hands.  Attempts by a social worker to calm her down only magnified Nanaki’s anxiety and Nanaki was getting more and more restless and more and more scared. 

The situation got to the point we had to be moved into a private room and more staff became involved. In the room it didn’t get any better and Nanaki resisted even while she was given a relaxant and was being put on a stretcher as the scheduled surgery time of 8 am had arrived. 

As parents, we knew she was in good hands but it was hard to see our daughter being taken away for surgery. Nanaki’s mom accompanied her to the surgery room, and while almost under sedation, Nanaki still had something to say … Oh, this is the surgery room … (pause) … whew. 

Nanaki’s battle was over and she had now accepted her fate.

Waiting during the 5-6 hour surgery was not easy. The first good news came about half way through, that one Cochlear implant was complete and successful and a couple of hours later more good news: the surgery was complete and successful. 

We found out later that Nanaki’s class was counting down her hours in surgery throughout the day. 

We patiently waited as Nanaki was placed in a recovery room. We would be able to see her when she started to come out of her sedative state. We were eventually invited in.

Nanaki tried to sit up on her bed to greet us, but still under the effect of the sedatives, she slumped and fell back. She tried to talk but nothing audible came out. She stared at her hands; they were bandaged and wrapped up with tubes still on each. She reached towards her right ear and felt the surgery bandage, she then reached over to her left ear and felt the bandage on that one as well.

Nanaki was pleased because she would have preferred only one ear, although best practice is to get them done together. She was angry, and showed it. However, it didn’t help things any that one of Nanaki’s eyes was half shut, mouth and lips swollen, and both sides of her face and cheeks immobile.

Only one parent could stay with her in the recovery room, so I decided to take all the things we had brought into the hospital room, and get the room ready for the night.  

When I got back Nanaki’s mom was in a wheelchair, recovering from fainting spell. It was hard for her to watch her daughter recover and we were not aware at that time that there was additional local anesthesia given on both sides of Nanaki’s face and her mom was just conjuring the worse scenario possible, even of a possible paralysis.

We eventually got Nanaki to her room and as the sedation wore off, her usual lively self took over. I skipped out to pick up her brother, Sahib, from school. Her taaya (uncle) dropped in as he worked across the street. Nanaki talked freely and shared stories for a couple of hours with him. 

I eventually came back with Sahib’s message for her on a small board in tow.  Nanaki was anxious to get the hand bandages off and IV removed, so that she could do justice to the meal that had arrived.  

It was getting late into the evening and Mom and Dad were fading. Nanaki, on the other hand, was only getting more energetic to the point she started singing and performing songs. It wasn‘t until one last walk around the floor that she finally decided to call it a day.

The next morning had Nanaki escorting us around as Halloween celebrations were in full swing at the Hospital. We could not have chosen a better day after surgery for Nanaki. Checking out the pumpkin carvings was a great joy.

Nanaki had her face painted with a pumpkin on one side and a spider web on the other. 

We were eventually discharged and Nanaki was eager to drop into her class at school on the Friday … in full Halloween garb. We took her there for a few minutes and the classmates were happy to see her, eager to know how her hearing was. We explained that the external Cochlear parts wouldn’t be connected and “turned on” for another three weeks. Followed by periodic adjustments, and then speech therapy for the new sounds as Cochlear sound is different than natural hearing sound.

We have passed the first week juncture and have had a checkup and all is well.  We “talk” to Nanaki through writing, that is how she “hears” us for now.

So Nanaki, if you can hear me … Mom, Dad, brother Sahib, Baba ji & Bibi ji, family, friends, teachers and classmates, they’re all so proud of you. 

With lots of love, hugs and kisses!


November 17, 2015
 

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