Sunday, August 28, 2016

How Did You Spend Your Summer?

Summer breaks are the best time to have surgery and clinic appointments for kids with complex medical needs.  Peter is no exception and spent several days at hospital clinics.  The surgery he had this past summer, however, was 100% his own decision.  Peter, who was born with microtia/atresia (missing his left ear entirely), elected to have surgery for a Cochlear implant called a bone-anchored hearing aid (BAHA).  Peter can hear normally on his right side but is profoundly deaf on his left. This means he is unable to localize sound, hear anyone on his left side, and struggles in loud environments.

With every grade advancement, Peter struggled more with his hearing loss.  Last year, he was especially challenged.  He was a freshman at a larger, public high school trying to make new friends. I can't imagine his frustration at being unable to hear conversations at lunch or in the hallways.  Any loud, crowded gathering was impossible for him to enjoy and left him isolated and exhausted.

Starting in second grade, Peter had access to the BAHA technology by wearing the device on a headband.  Not ideal, but I never wanted him to go through the surgery without testing it.  He would never consistently wear the headband at school or use the FM system that was provided with it.  It was a constant struggle.  When I would ask him if it helped, he would give a non-committal answer. He knew that giving the slightest positive remark might mean having surgery.  His response was always, "I don't want to look like Frankenstein with something sticking out of my head."  The irony of this statement always made me laugh because he already has obvious craniofacial differences. But, I understood his desire not to invite more opportunities for staring.

Now, for those of you unfamiliar with this surgery, it is not a huge bolt sticking out of your head! Rather, it's a small snap (like something you would see on Barbi clothes) and barely noticeable. I could've argued about it with him, but I just let it go.  I did not want to force this surgery.  I was also uncomfortable with possible complications-- skin grafts, infection risks, and daily care requirements. I believed that Cochlear would eventually develop a better and safer way to adhere the sound processor, and, fortunately, they did. 

Cochlear now offers the BAHA Attract.  By placing a magnet on top of the retaining screw (the part implanted into the skull to enable bone conduction), there is no need to have the screw protrude from the head.  Thus, no need for a skin graft or daily care of the site.  Even better, no Frankenstein bolt!

Cochlear Attract System
What really sold Peter, however, is that the sound processor is now blue-tooth capable and can be controlled via an app on his iPhone.  He was given a trial to use for a couple of weeks and within a few days of using it, he said, "I think I want to have this surgery."  That was a courageous statement coming from a kid that will do just about anything to avoid surgery.  It was then obvious to me that it was time to move forward with the BAHA.  My job as his primary caregiver and advocate was to make it happen.  This time, unlike many others, my job was easy.

Dr. Michael Shinners, a neurotologist specializing in neurological disorders of the ear, was perfect for Peter's needs.  Dr. Shinners is an excellent surgeon who really listens to and cares for his patients and their families.  He worked with me to understand Peter's anxieties and to ensure the best and safest procedure for the surgery.  Peter has a complex airway, so anesthesia is always a concern.  The team that worked with us at NorthShore's Highland Park Hospital was attentive and professional.  We were very happy with Peter's care from pre-op to discharge.

The night before the surgery, I learned via social media that one of Peter's friends from Children's Craniofacial Association was having the same surgery on the same day.  I was so happy they had each other for support.  It helped Peter knowing that he was not alone, and they had fun comparing scars and haircuts afterwards.  This is one of the many reasons we love our CCA family!

Peter & Ryan - CCA Friends Since 2005
Surgery Day with younger brother, Jacob

Peter was "activated" with the BAHA sound processor one month after surgery.  His eyes lit up and his smile was HUGE when the audiologist turned it on.  Thanks to Dr. Shinners and his team, including audiologist Dr. Susan Marek for making this happen.  Peter just started his sophomore year and is hearing much better in class and in the hallways and is less tired at the end of a school day. 

Because this surgery was Peter's decision, he is 100% vested in caring for the device, and he wears it without being reminded.  Although he would've benefited from having it sooner, making the decision himself was a powerful lesson in self-advocacy.  He ultimately has to manage his own healthcare, and this was an opportunity for him to do that.

Choosing kind,

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