Getting the Cochlear Implant
On February 9, 1999 Jake became the ninth known Auditory Neuropathy child to receive a cochlear implant. He was the first AN child implanted with the Clarion device. It was so frightening to take him in that morning. I had watched the movie of his surgeon implanting a child but it was pretty gross thinking about it being your child's head they are cutting and drilling on. We went to the hospital, checked in and went through the routine checks just to be sure he wasn't ill before they took him in. We were led to the operating room waiting area to wait our turn. The nurse anesthetist came to give him Versed, a drug to relax him, and he promptly spit it right back at her, just like I told her he would. He got just enough of it that he was getting a bit drowsy when they came to take him into the surgery suite. I was given a sterile paper suit to wear when I walked him into the operating room to say, "It's going to be okay." He was so brave! He jumped right on the operating table and lay down. They were telling me that they would take this mask and put it over his face to put him under, that he may fight it and that it would knock him out quickly.
Jake reached up and grabbed the mask and put it on his own face and smiled at them! It was like he was saying, "Let's get this show on the road." As his little eyes rolled back, I started to cry. I knew I had to leave him, but for a moment I wanted to stop and just look at my precious son. I wondered if it was the right thing to do, how would he feel about it when he is older, what if it doesn't work? It was almost a panic feeling and I couldn't breathe for a moment.
I hated having to leave my tiny little boy in there all alone. But I knew that the wonderful surgeon, guided by God's hand, would take care of him for me. I said a silent prayer and left the room. The nervousness I felt while waiting was pretty intense. It was a long morning but when the surgeon showed me the x-ray of the full electrode array positioned inside Jake's cochlea, I knew it would all be okay.
The period immediately after surgery was very emotional time for me. I cried many tears in the first five days. I want to give details about how things were so that other parents might know what to expect their child to look like and how they might act after surgery.
After surgery, which lasted about four hours, Jake was sent to the recovery room. I was allowed to go in to communicate with him when he woke up. I wasn't as prepared to see him as I thought I would be. I can take care of people all day as a nurse but my baby was laying there with all this equipment. He had a huge bandage on his head, an oral breathing tube in his mouth to keep his tongue from falling back and choking him, he had ointment in his eyes and his faced looked so puffy. I started crying when I saw him, afraid he would be angry when he woke up and had pain, afraid that it wouldn't work, afraid about everything you can imagine.
After about an hour, he started to come out of the anesthesia and coughed the airway tube out just like he was supposed to. His vital signs were all stable except that he needed a warming blanket for a bit because sometimes after surgery people feel really cold and their temperature may be slightly below normal. He was VERY irritable when he was trying to wake up, like an angry drunk; just like they told me he would be. Of course, we already knew that he didn't do the sedation thing very well! I had to hold him because he was thrashing in the bed, fighting the oxygen mask, the IV tubing, the pulse oximeter, the blood pressure cuff and anything else that was touching him. He had his hearing aid in his right ear and I tried to cue to him that it was okay, but with the ointment in his eyes he really couldn't see what I said.
The anesthesiologist saw the battle going on and brought us a rocking chair behind the curtain so I could rock and calm him. What an angel she was! He kept trying to touch his head but was so woozy that he couldn't get to it. He looked at me angrily and said "ouch" so I started crying again. They gave him a pain medication through his IV and he settled back down but I had to rock him or he was awake and kicking. The catch was that he couldn't be moved from the recovery room until he drank something and was more awake. After he did start to wake up again, everything he tried to drink came right back up, so we stayed.
After being in the recovery room for over two hours, a room was available on pediatrics but Jake wasn't ready to be moved so we would have to wait until another room was available. Finally, at about four o'clock a room was available for us. We moved to a room at five that evening. I was totally exhausted by that time but Jake was sleeping because he had been given more pain medication. He would wake up and whimper a bit and go back to sleep. He finally woke up around two in the morning and was very thirsty. They brought him juice, which he promptly gulped down. It came back up in less than a minute. He would try to eat ice chips and up they would come but he still had the IV for hydration. However, keeping it in was a battle, one that I lost! I was lying in the bed with him, drifting off to sleep when I felt this cold wetness. Yes, he handed me the IV. He was allowed to leave it out but had to keep fluids down or it was going back in. The poor baby drank and threw up, drank and threw up for about two hours before they tried a nausea medication and some juice finally stayed down.
By the time breakfast came, he was eating graham crackers like there was no tomorrow. He was trying to walk all over the halls but was still wobbly and I was running around trying to avert disaster. I was just praying to get home and get some sleep because I had been up for over 24 hours and was a bit wobbly myself. We were discharged around nine o'clock that morning with pain medication, antibiotics, and orders to leave the bandage on until Tuesday when he was to see the surgeon. I know, that was my thought too, "Yeah right he will leave it on for 4 more days." But it was a precaution, because he is such an active little guy and the doctor didn't want anything to happen to the incision.
When we got home Jake posed for pictures in his bandage. He stayed inside all day and ate little snacks on and off without throwing up. He would ask for his "boo boo hurt drink" when his head hurt and played on the computer. It was a nice calm day with lots of phone calls from family and friends. The next day, he started trying to scratch his head around the edges of the bandage. I gave him a small dose of pain medication just for prevention. The tape was tough so he couldn't get to the site but that wasn't from lack of trying.
His biggest complaint was that he wanted to take a shower, wash his hair and to ride his bik e! By late afternoon, the bandage was getting loose and he was trying to get under there and scratch. He started pulling all the gauze from underneath it and I gave him medicaine and put him to bed. Late Sunday morning it was hanging on by a thread so I reinforced the tape.
Later that night he walked up and handed me the bandage. They had used the new skin glue to close the incision and sutures to reinforce it. His hair was full of gooey material and his ear seemed to stick out a mile. This time I cried because his ear was out so far and that was something I never even thought about. I took pictures of the incision, cleaned it, bandaged it up, gave him pain medication for good measure and put him to bed.
He was in good spirits the next morning and went outside to play with his brother. I caught him riding his bike with training wheels and made him get off. Not long after that the bandage was handed to me again. I decided to just keep the incision covered. By this time he was back to his old self, running, jumping and acting silly. His problem now was that he wanted his hearing aid in his implanted ear. I finally had to try to put the earmold in to show him that it didn't feel so good and he stopped asking.
At his five day post operative checkup, everything looked great. There was still a substantial amount of swelling and bruising but that is normal. His incision was clean, dry and healing well. We went over to the audiologist's office and they hooked him up to a test processor to see if all the electrodes were still working and they were. Then they tried some beeping tones through the processor and he heard it! I was so excited when I realized what was happening and the audiologist smiled and said "He heard it!" And of course, I cried and this time Dad's eyes filled with tears. Knowing that he could hear with the implant made a month seem like so long to wait for activation.
Jake returned to preschool the next day, six days after surgery. He had a good day without any problems and was excited to show his teacher and assistants his site. The other three children were out that day so he got a lot of personal attention, which is right up his alley.
Slowly, the swelling and bruising were fading and his ear was pulling back into place. Whew, I was worried that ear was going to stick out forever. It was almost time for his initial stimulation to take place. We were getting very excited but trying to be realistic and remember that he might not like the sound he heard when it was activated for the first time. But it would be so wonderful if it was activated, he smiled and said "I hear it" but that isn't how it happened. To read about initial activation please proceed to the next page.
This is the incision that they used at this time. It was a long and curved incision. Jake has skin that scars easily so his is not as thin as many as I have seen. The incisions are much smaller now with the minimally invasive approach used. His biggest issue with the surgery was the itching as his hair grew back in and he had one stictch that did not disolve and had to be removed at the office.