A few months ago I wrote an article here on Limping Chicken about my apprehension and fear leading up to my son’s re-implant surgery.
Cameron’s cochlear implant had been removed earlier this year following an infection around the internal components, prolonged pain and hospital stays.
In mid-July I took Cameron back to the hospital to have the re-implant surgery. Having successfully replaced the electrodes and other internal components during the operation (whilst also doing a quick fix-‘er-upper surgery on his tympanic membrane while he was in there) the surgeon pronounced him fit to leave hospital.
Discharge did come with a list of don’t do’s that made even my laidback pre-teen quail.
Because of the extra surgery, we would need to keep his ear canal bone dry so no swimming, water bombs or water pistol fights during the summer holidays this year and lots of care while bathing. Whilst to prevent complications for the implant he would not be stepping foot on our brand new family trampoline and his beloved skateboard helmet would be hung up for a few months.
Cameron was pragmatic, but as you would expect with any eleven year old, there were moments of frustration and times when he felt that it was ‘just not fair’. But with a target of switch-on and a further goal of being given the ‘ok’ to go to Rampworx (a skate park to put fear in my nightmares) with his pre-teen deaf peers in the Autumn he did an admirable job of making the best of things whilst watching subtitled movies by the dozen!
Switch-on day arrived and there were too many emotions going through me to name. Anxiety at whether all the electrodes would switch on successfully balanced with an excitement that this time Cameron would be able to describe to us what he was hearing and feeling in those first few days post switch on. Something he had been unable to do as a toddler at the time of his switch-on.
Arriving at the implant centre, we met one of the student nurses who had been involved in Cameron’s care whilst he had been in hospital for his re-implant. She explained she had requested to attend a switch on appointment, in her own time, to see the other side of the process with which she had been involved with.
We were only too happy for her to observe Cameron’s appointment. Whilst for some families, the note taking and extra person in the room at such a pivotal time could be off putting I think it is so valuable for all professionals involved with our children to understand the reasons and consequences behind the choice to have this surgery that if ten of them had lined up I think I would have let them all in!
As we saw green lights appear along the lines of the cochlea graphic on the computer screen in front of us, I breathed out a huge internal sigh of relief. The new electrodes which the surgeon had placed into Cameron’s cochlea were all in place and working. As an extra bonus there was no internal nerve pain which he had experienced with his first implant.
We then sat for the programming part of the appointment. When Cameron was first implanted he was very young and so this part of switch on was shorter and less detailed. Now he is older the audiologist was able to set the levels at which Cameron would begin to listen more specifically with the feedback he was able to give them. The levels needed to be set carefully so that the sounds he would hear would not be so loud that they would be uncomfortable for him but not too quiet either.
After an hour and a half, but which seemed like much longer, the session was over. Cameron was exhausted. The concentration it had taken for him to listen had drained him. We left Manchester with a simple enough task in words but difficult in its complexities: to help him learn to use his cochlear implant to listen again.
We have been exceptionally lucky. Cameron has been able to hear speech from the first week. He still finds that it sounds distant and unclear at times and struggles with lower pitched male voices rather than higher pitched female voices but he is doing amazingly well.
The week after Cameron was switched on we had booked to go on holiday to Wales. The back seat with his two siblings was a challenge to his capacity to cope with noise but since his implant has been switched on he has made strides of progress every day.
We are still at the stage of working through his programmes to find where he can optimally listen and concentrating on listening tires him a lot but he feels he is making progress. Seeing my son start secondary school two weeks ago, with the confidence he now has again, is something which only a few short months ago I could only have dreamed of.
Now, I just need to explain to his form teacher the reasons behind his summation of her weeks teaching being the compliment ‘Your voice is good to listen to!’ rather than a direct response about her teaching style………..!
Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing, running the Wirral Deaf Children’s Society (with her friend Lisa) and raising awareness regarding deaf issues wherever she can.
The Limping Chicken is supported by Deaf media company Remark!, provider of sign language services Deaf Umbrella, the Deaf training and consultancy Deafworks, the RAD Deaf Law Centre, and BID’s upcoming 5th anniversary performance by Ramesh Meyyappan on 12th October – don’t miss it!