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BEGINNING THE
COCHLEAR IMPLANT PROCESS
This describes the beginning of Ethan's journey into the Cochelar Implant process. For an overview of what a Cochlear Implant is and how it works, click here. If you are really interested, there is a pretty good video presentation you can view at the Cochlear site, http://www.cochlear.com/NewToCochlear/161.asp .
Eric Cahill put us in touch with Sarah Pierce, the Cochlear Implant Process Coordinator at Boston Children’s Hospital. Sarah informed us of our “next steps” and sent us an information packet and questionnaire to complete. Everything has fallen into place and happened rather quickly from here on out.
I had Mass Eye and Ear send Ethan’s file over to Children’s immediately. If Ethan was going to be implanted, it was going to happen at Children’s. To me, it was a no-brainer. I had only heard fabulous things about their implant team, and only knew of success stories.
We knew there were 3 surgeons at Children’s that performed the
Cochlear Implant surgeries:
Dr. Kenna (Director of the Cochlear Implant Center), Dr. Licamelli,
and Dr. Roberson. We had met
Dr. Roberson when Ethan had his ABR and we really like his style. Not much to go on, but we thought
that was important. We chose
Dr. Roberson. How could we go
wrong with anyone at Children’s?
Dr. Roberson reviewed Ethan’s file and
said he could see Ethan on Thursday, November 14.
COCHLEAR IMPLANT OVERVIEW
The evening of November 13, Yancy and I went in to Children’s to meet with the Director of Audiology, Marilyn Neault. This visit was our initial meeting to discuss Cochlear Implants, the process at Children’s and Ethan’s candidacy for an implant. Marilyn typically schedules this first meeting with the parents in the evening so both parent can attend, and asks that the parents come alone (without the children), so that there aren’t any distractions.
This evening meeting just shows how dedicated and fabulous Marilyn is. We met with her for a little over two hours, covering everything in a very relaxed, informal, comfortable meeting. She allowed us to steer the direction of the meeting, while providing us with all the information we needed. We received the “Cochlear 101 class”, held 2 types of implants, discussed risks, implant device failure rates, surgeons competencies, received an overview of the mapping process, and heard of so many success stories. We walked away this evening feeling extremely confident and ready to move forward.
DOCTOR EXAMINATION AND MEETING
The next day we went back with Ethan to see Dr. Roberson. Ethan was briefly examined and then Dr. Roberson discussed Cochlear Implants from his perspective. He was very upfront, stating that he would hold nothing back and just “tell it like it is”. This is why we chose him. He also explained that he was the surgeon with the least implant experience, only 15 Cochlear Implants surgeries performed. He does many other types of surgeries though, that require the same skills of this surgery. He wanted to be up front, and ensure that we were comfortable with who we were choosing. He offered transferring care, if we so chose. We still felt he was our guy…
The important things we took away: 1) Ethan is a great candidate 2) Signing will not impede Ethan in any way, only help him 3) Dr. Roberson was right for us 4) We couldn’t wait for this to happen.
EVERYTHING ENDS UP FALLING INTO PLACE
November 21, 2002: The decisions we are making are huge. It's two fold...you can't think about them long enough, yet the longer you think about your decisions, the harder it gets to decide. We had a few days to think about the surgery, and during those few days I talked to a few people regarding who would perform the surgery. I realized that if I had the choice of which surgeon I was going to give my little guy to, it was going to be the one that had done this a million (okay, hundreds) of times before...not just 15. Although we really liked Dr. Roberson, his experience with CI surgery didn't compare to Dr. Kenna's, Director of the Cochlear Impant Center. If anything ever did happen in surgery, and I knew that I didn't choose the most experienced CI surgeon, I would never forgive myself. I called the CI Coordinator today and asked if we could possibly switch. It sounds promising!
We were in for Ethan's Behavioral Hearing test the following week, when Dr. Roberson approached us. He proposed a solution we felt extremely comfortable with: he would perform the surgery and Dr. Kenna would be available to assist if any complications arose. We were on board with that.
Ethan's behavioral hearing test showed that his right ear was his worst ear, confirming which ear to implant. The audiologist, Eric Cahill, was able to fit him with a more powerful hearing aid in the interim, a Widex Senso. I could tell from the amount Ethan was vocalizing, that it definitely made a difference. While leaving our appointment, the CI coordinator, Sarah Pierce, stopped us and asked us if January 10 would be okay for a surgery date. Let's just say I didn't have to check my calendar for that one. I think I may have literally jumped up with joy. Ethan would be getting implanted 8 weeks from when we began the CI process at Children's. That made me happy. At this point, I felt so sure and ready for him to be implanted, and things were falling into place. Now, we just had to wait...
The last appointment of the CI process was to meet with the Boston Center for Deaf and Hard of Hearing Children (BCDC) at Children's. We had an appointment with a Speech and Language Pathologist and a Child Psychologist. We ended up meeting with only the psychologist, and she did a developmental evaluation on Ethan. Let's just say he nailed that test like no other. He pulled out all his tricks and more, testing above his age level (I had to throw that in there, I'm his proud mom).
SURGERY DAY: JANUARY 10, 2003
Ethan's surgery was scheduled for 7:30 am on Friday, January 10, 2003. We had to be at Children's PreOp at 6:00 am. Emma stayed with her Mama and Papa who were kind enough to come in from Upstate NY. Yancy, Ethan and I arrived to PreOp promptly at 6:00 am, and joined the other cuties who were getting into their new hospital PJs. Ethan got his new PJs, and enjoyed playing around and looking at the fishies. Around 6:45 all the families were escorted to the other pre-op area to meet up with their surgeons.
Dr. Roberson was there to greet us. Ethan was still his cheery self, despite the fact that he hadn't had a thing to eat or drink since 9:00 pm the previous night. Ethan played with the anethesiologist's stethoscope, we took pictures, I put "operating room" clothes / hat on, and I took him in to the operating room.
 
Upon exiting the pre-op area at 7:25 am, we entered Operation City. What a metropolis they have there. It was hustling and bustling, and my mental picture of 2 or 3 operating rooms was so far off base. I proceeded to carry my little guy into the room. In there already was a team of nurses and doctors, all so friendly and warm, to greet us. I held Ethan in my arms as they placed the mask near his face. He did just fine. I then put him on the operating table, knowing he was going to be in the best of hands, and watched him and held his hand as his eyes slowly closed. He was peaceful now, "I love you Ethan". It was exactly 7:30 am, and we were right on schedule.
I can't say I was nervous, and I don't think Yancy was either. We hung out in the waiting room, chatted, he read, I watched the clock, and we looked forward to the updates we received from the OR liason: 9:00 am - They're still drilling (lovely); 11:00 am - Dr. Roberson comes out, says that he's closed up, things went so smoothly, all electrodes were inserted, and Marilyn Neault just has to test the device; 12:15 pm - Ethan's in recovery and we can go see him!
It was so good to see our strong little guy, lying in his huge bed in the recovery room. He had the big bandage around his head, and was still sleeping. Within 5 minutes or so, he was opening his eyes a bit. I didn't think he knew we were there until I walked away and he started crying for me to come back. I was able to rock him, get thrown up on, and hug him. We were in recovery for an hour or so, and then went to Ethan's room, were we had 3 other roommates.
 
Ethan was able to drink a bit of water by 4:00 pm, smiled at 7:00 pm, and ate 8 crackers, 8 oz of apple juice, and 13 oz of milk by midnight. I laid with Ethan a bit and we sat in the chair and watched TV a bit. We got a little sleep during the night. The doctor removed his bandages in the morning. It looked fabulous. Extremely clean, hardly any swelling, and Ethan didn't need a drain for the incision either. We left the hospital by 11 am the next day. Daddy and Emma picked us up. I think it was good for Em to see Ethan in the hospital, know that he was okay, and that the hospital was an okay place with some fun things like the TV and playroom, etc. Wow, this part is now over!
RECOVERY This will be short. We got home on Saturday, Ethan had already started to play. He felt good. By Sunday, he was back to his one-year-old self. He took the Tylenol with Codeine for three nights. He is on his antibiotic for 10 days. Oh yeah, we had to take his ride on toys away for awhile. He rides them like a skateboard. Not good! His stitches fully dissolved by the fourth week and our little guy's scar looked "beautiful", oops, I mean "tough"!
ACTIVATION DAY: FEBRUARY 7, 2003
What a memorable day! Things could not have gone more perfectly. Ethan's activation appointment at Children's Hospital Boston was at 10:30 a.m. Yancy, my mom, and I went in with Ethan. He had not napped at all, so I was a bit skeptical as to how things were going to go. We met Marilyn Neault, Ethan's audiologist, at 10:30 and she explained the course of events for the next two hours. Yancy was able to videotape the entire session, so we would be able to relive this wonderful moment over and over again.
ETHAN'S REACTION TO HIS FIRST SOUND
Ethan sat in a little chair, and was entertained by Marilyn's assistant, a graduate student. Marilyn's first task was performed by playing sounds that only Ethan could hear via his processor (click here to watch Ethan's reaction to his first sound {low-348Kb / high quality-33Mb}. She showed Ethan that every time there was a sound, a string of lights would light up. They trained Ethan to look at the lights whenever he heard a sound. The assistant would wave at the lights when they went on. They showed this to Ethan about three times, and from there on, whenever Ethan heard a sound, he looked at the lights and waved (click here to see {low-541Kb / high quality-70Mb}. He played with a bowl full of stickers the entire time, dumping them and putting them back in. It was so cute, and he was so right on the money. Whenever he heard the sound, he would stop playing with the stickers for a second, look toward the lights and wave, and then go back to playing with the stickers (click here to see {low-545Kb / high quality-66Mb}. He often waved before the lights even lit up. This exercise allowed Marilyn to map different sounds to the appropriate electrode and set levels, from the lowest frequency, to the highest frequency, for each of the 22 electrodes. Because he was so cooperative, Marilyn was able to map all of the 22 electrodes within a half hour.
ETHAN HEARS THE SOUNDS IN THE ROOM
After she had all of the electrodes mapped, she turned only 13 of the electrodes, and turned on the microphone, so now Ethan could hear sounds within the room. She recommended that we be quiet at first and let Ethan make the first sounds. He had a drum and drumstick, and a little ball with a cup. He immediately realized that what he was playing with was producing a noise. When the ball dropped into the cup, he clearly recognized there was a noise and waved toward the lights (click here to see {low-740Kb / high quality-96Mb}. He quickly repeated his actions, to hear the sound again.
We began talking at a low level. There wasn't a tear-jerking moment of us calling "Ethan" and him turning; we realized that he has to learn to make sense of the sounds that he was hearing and learn to associate his new sense of hearing, with his strongest sense, his sight. We were all in amazement though, smiles from ear to ear, watching our little guy explore his new world.
After Ethan proved Marilyn he could deal quite fine with this little amount of sound he was getting, Marilyn turned on the remaining 9 electrodes, so that now all 22 were on. He continued to explore the toys and sounds while we reviewed how to work all of Ethan's new electronics. The weird part was, we were being home sent home with this wonderful gift, our deaf son hearing, and it's dependent on batteries!
HOW DOES THIS ALL WORK?
The cochlear implant is in Ethan's inner ear connected to a RECEIVER behind / above his ear in-between his skin and his skull. This is what was implanted in Ethan during his surgery. On Activation Day, he got his external components: 1) PROCESSOR 2) MICROPHONE and 3) TRANSMITTER.
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The PROCESSOR sends the converted sound through the TRANSMITTER, which sticks on Ethan's head via a magnet where the RECEIVER is. The RECEIVER accepts the sounds and sends it to the appropriate electrodes, allowing Ethan to hear.
So, if Ethan's not wearing on one of these 3 components, or the PROCESSOR is out of batteries, Ethan won't hear. So you can understand how important Ethan's new electronics are. The processor is the most expensive external piece costing $6000. There a couple precautions we reviewed. Static electricity can cause all of Ethan's specific programs in his processor to be erased. Ethan will have to remove all of these things if he goes on a plastic slide, ball pit, etc. In addition, the processor can never get wet. He will not wear this in the bath, swimming, etc. This is where the sign language will come into play.
GOOD THINGS HAPPEN TO LITTLE PEOPLE...
Marilyn put 4 programs on Ethan's processor, each increasing in intensity. Ethan left the appointment on Program 1. When we got home we changed it to Program 2. In the evening we changed it to Program 3, he adjusted to each new program remarkably. He vocalized all day, enjoying his sounds he was making. He played with so many of his toys, as now they had an entirely new dimension to them. He we fascinating to watch. If someone talked to him, he wouldn't necessarily turn to them, but if it was quiet and someone talked, he started turning to the noise.
February 8, 2003 - I put Ethan's processor on right after he woke up. We started out in his quiet room, and went from Program 1 to Program 3 within minutes. A couple hours later, after seeing that he was doing just fine, we went to Program 4, the program with the most intensity that he had, and again, he did fine.
Ethan was in the dining room by himself, looking out the window, and Grandma Mary walked into the room and said, "What are you doing? " and Ethan immediately turned around. How exciting! You have to understand this has never happened before!
February 10, 2003 - Ethan went back in to get "fine-tuned" and received 4 new programs. These programs essentially increase in loudness. We will gradually work our way up from Program 1 to Program 4 over the next month, when he has his next appointment in March!
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