Cochlear implants are tricky devices. They are an incredibly complicated and delicate technology that have produced amazing results for deaf children, providing them access to hearing. The doctors and specialists who work with these devices are highly specialized in their field. The idea of threading a electrode array through a tiny, pediatric cochlea, is unbelievable in and of itself – let alone the surgery required to get the device into a child’s head. But I digress…
For parents, the mystery of the cochlear implant, of having a bionic child, is not lost, but it can be often forgotten and made to seem just part of ‘normal’ life. You get used to the routine of putting on your child’s ‘ears’ in the morning. You grow used to adjusting maps and volume to gently ‘wake up’ you child’s hearing so that they are not shocked by the usual sounds of the morning routine coming out of profound silence. You smile when your young child asks for her ears by pointing to them as a request.
For Kate, receiving bilateral cochlear implants (CIs) was a medical feat. Over the first year, it was a challenge to get Kate used to her devices. Over the second year, Kate was learning to listen and starting to respond to sound. In the past 6 months, she is clearly showing she understands what we are saying to her and responding with either ASL (American Sign Language), or in recent weeks very early verbal responses. The give and take of hearing, understanding, responding – the reciprocity of language based on hearing – can be taken for granted. In our home, it is absolutely celebrated on a daily basis. It brings tears of joy and moments of pain and fear. But mostly tears of joy. 🙂
There is also a vigilance needed when you have a child with cochlear implants. There is technology to be aware of, devices to maintain, and ensuring your child’s magnet sites are healthy. A breakdown in any one of these means no ‘ears’ and that is not a good thing.
Physically one thing to watch for is breakdown of the skin at the magnet site. The magnet that holds the processor to the skull sits just under the skin of the skull. The thin scalp skin lies between the two magnets and provides a very poor barrier between them. Young thin skin is susceptible to being irritated and ‘breaking down’. Parents play with magnet strength and try different means of balancing healthy skin with a processor that will stay stuck to the head without constantly falling off.
I watch Kate’s skin closely at her magnet sites. We had a serious infection at the magnet site 18 months ago and I am not keen on repeating that. Kate woke one morning with a magnet site so swollen it was the size of a plum and her team had thought it possible that her magnet may have actually moved. After xrays and a brief hospital admission, in the end, a strong antibiotic and keeping her device off for 6+ weeks was what was needed to heal the site.
This Friday, I knew that Kate was in trouble again and would need to have her magnet site seen by a doctor. Redness, inflammation, localized swelling, yellow discharge, crusting, (am I being too gross?), were all symptoms of a bacterial infection. Staphylococcus aureus (staph aureus) is a common skin ‘flora’ (i.e. it lives on our skin), but it should remain on the surface of the skin and not enter the body – when it does, a nasty infection occurs. Cochlear implant site infections are particularly concerning because the bacteria can adhere to the metal of the magnet and travel along the electrode wire that threads through the cochlea ending at the auditory nerve microscopically close to the brain. Staph – or any bacteria – close to the brain is a serious meningitis waiting to happen.
Kate was started on Cephalex Friday. 48 hours later, her infection at the magnet site looks the same – no better and no worse – so a new antibiotic as been prescribed, Septra.
The sad thing – and joyful – is that Kate has been ‘asking’ for her ears by signing for them. She is not happy about wearing just the right side and keeps taking the device off and throwing it at me. This morning, she went and got her devices from her drying box and asked for them again. I think with perseverance and consistency we can get her to wear the right side on its own. I guess the feeling of wearing one device and hearing from one side only is not comfortable for her. I try to imagine what it is like by covering one of my own ears.
I’m hoping all of this is resolved quickly and passes easily. Having a child with an immune deficiency who is battling a staph infection can make one nervous.
We have also made so many gains in the past several weeks – words coming fast and furious – that I just want to get back to that as soon as we can.
Fingers crossed that we get her ears back soon.