Cochlear Implant Activation Day

We drove into NYC a day early, because NYU was amazing and managed to squeeze in Nolan's post-op appointment on the Monday before his activation. We stayed in Secaucus this time, because hotel rates in the city at Christmastime are ridiculous. The hotel was great, and we drove to the mall near the Newport Station and took the PATH train in from Jersey City. There was some traffic, but it wasn't horrific and was definitely worth the savings in hotel fees.

Nolan's appointment wasn't until 3:00 pm, so we drove to Hoboken to check out the Cake Boss bakery. We were able to meet this really awesome family while we were in town. It was really cool to meet everyone in person, and my boys LOVED Cormac, Colin, and Ciaran.

We wanted to do something fun that all five boys would enjoy, and the Liberty Science Center was closed on Mondays. We ended up going to a place called HudsonPlay, which has an indoor Ninja Warrior style obstacle course. It was kid heaven.

Nolan's post-op was at 3:00 pm and we were on a tight schedule to make it, so we ate at McDonald's and caught the PATH train to 33rd street. We made it into the Otology department just in time. We were taken back and Nolan was seen by the surgeon, who said everything looks as it should. Nolan still can't swim for a little while and we have to use Ciprodex ear drops for another week, but this is all normal for a recovering tympanoplasty. You can't even see the scar behind his ear - the surgical technique is amazing.

The appointment was over quickly, and we left to explore the city. We wanted to see Rockefeller Center decked out for the holidays, so we walked over and enjoyed looking at the lights. The boys enjoyed going into the Lego store and the Nintendo store. We decided to go back to Jersey City for dinner, and ate at Orale - living in Western NY, we are always desperate for great Mexican food.

It was nearly 11:00 pm by the time we settled into bed that night. We had walked a lot and everyone was exhausted, so we had no issues with falling asleep. The activity of the day was fantastic to wear everyone out!

We were up early on Tuesday, since we needed to drive through traffic and get into the city during rush hour. We didn't have to wait long before we were called back for Nolan's activation. They did an initial check on his implant and electrode #11 wasn't working, but we were told losing one electrode wasn't a huge deal. Still, I was disappointed - I hated losing even one electrode. Fortunately, the issue was caused by an "air bubble" and disappeared when current was run through the array. Big sigh of relief! All 16 electrodes were up and running.

Volume levels were tested (we couldn't hear these tests - they were all inside Nolan's head) and once set, the microphone was turned on.

He was so nonchalant about it - and it exceeded our wildest expectations. We expected him to hear "whistles and beeps" on the first day, but he was able to understand open-set words within the first two minutes.

He was given four programs that day - the first three with increasing levels of volume and the fourth one was quieter, in case the volume was too much for him on that first day. Within 30 minutes of leaving the appointment, he was on the highest volume level.

We wandered around Union Square and the Christmas market and had lunch at Max Brenner (the chocolate is to die for). Nolan's battery wasn't fully charged from the factory settings and died in about 2 hours. We were all really tired, so we opted to head back to the hotel to re-charge the battery and relax.

Nolan has been able to describe the sounds he is hearing. All voices sound much lower-pitched to him, so I sound like a man with a deep voice. Dennis is unintelligible and has a voice too low to register. Crunching leaves sound like high-pitched dinging. Clapping and water running sounds normal. He has an echo of sound on some low-frequency consonants, especially the "D" sound (this should resolve with MAPping). He is also refusing his hearing aid, so we know it isn't from the acoustic hearing in his left ear (that ear is severe so there isn't a lot of sound coming in without a hearing aid).


The next day, we returned to the cochlear implant center and Nolan was given four new programs. The first three were of increasing volume levels again, and the fourth one was a noise program. Nolan can use that program to "tune out" background noise and will only hear the person he is facing. We also picked up Nolan's new Neptune processor, which is totally waterproof and can be used for swimming, snow activities, and in heavy rain.

Before heading out on the long drive home, we went to the National Museum of Mathematics. They have many hands-on activities and it was a perfect stop for a couple of hours.

I couldn't believe how well Nolan was hearing with his implant - just one day after activation. He could hear me on the car ride home without looking at me - despite the road noise.



He has been activated for 5 days now and his progress is absolutely astounding - but that is another blog post. We are over the moon with how well he has adjusted to the cochlear implant, though now our battle lies in getting him to continue to wear the hearing aid in his other ear. We insist for school hours, but when he has the option, he removes it and prefers the implant by far.

Surgery Day

Living far from the cochlear implant center means a significant amount of planning is involved for each appointment. For Nolan's surgery, the boys' grandma flew in to take care of Matt while we were in New York City. Surgery was planned for Friday (Veteran's Day), but we needed to leave on Thursday. The boys had a half day of school on Thursday, so the plan was to let Nolan go to school and leave directly once school was dismissed.

Unfortunately, that same day, a man shot his wife and went on the lam in our local area, causing all of the schools to go on lock-down. The schools are fantastic about keeping our children safe, but this was quite stressful as we worried about where the man could be and wondered how long the lock-down would last. In addition, Dennis is leaving for a business trip in China shortly and was trying to get Visa documentation through as the trip and the Visa deadline are in close proximity. I managed to get the boys and Dennis managed to fax the necessary paperwork through by 3:00 pm, which is when we left. We made it to our hotel in Secaucus, NJ at 10:00 pm - which was a pretty fast trip! The benefit of leaving later was the total lack of traffic late at night.

Nolan's check-in time was 8:00 am for a 10:00 surgery, and we knew we needed to get through the Lincoln Tunnel. We left early and hoped the traffic wouldn't be too horrible - it wasn't and we made it to the hospital early.

 Driving into NYC in the morning

Nolan is not a morning person

We checked in and they took Nolan back immediately - which was fantastic. It wasn't long before he was weighed, checked, and allowed to watch a little T.V.

Watching college football

The anesthesiologist stopped by and we went over his history, and we opted for the pre-surgical Versed to help ease any anxiety prior to surgery. Nolan can sometimes become very anxious prior to surgery due to his past experiences, so the Versed was a good choice. It did help him remain relaxed through the rest of the morning.

Dr. Roland stopped by to mark the ear undergoing implantation, and Nolan was dressed for surgery and ready to go.

 Ready to go

Marking the ear

I was allowed to go back with him and he was soon asleep. Dennis and I went down to the lobby (Child Life is fantastic at NYU and escorted us down to the lobby to show us where the cafe was located). We ate quickly and then went back to the waiting room, where we were updated frequently as to Nolan's status. The surgery took about an hour and a half, and Dr. Roland came out to tell us the tympanoplasty was done and the cochlear implant was in place and working perfectly. Everything went as smoothly as it could have gone. 

It took a little while to see our guy, as the recovery room was a little overcrowded that Friday. They moved him to recovery and we finally saw him at around noon. He was given a little extra fentanyl as he was in some pain at that point of the day.

Sweet buddy

For other parents who are going through the same thing, the first couple of hours in recovery were pretty rough. Nolan would wake up whimpering and was in considerable pain. He received a little more fentanyl and then returned to sleep. We had to do this twice, and it was hard to see him struggling those first couple of hours. We are very grateful to the nurses, who took fantastic care of him and also recommended the fentanyl, as when he finally woke up from the final dose, he was MUCH better.

By 3:00 pm (just four hours post-surgery), he was awake, talking, hungry, and thirsty. The turn-around was dramatic and he was doing amazingly well! He drank a good deal of ice water. He requested a popsicle. Unfortunately, there were no popsicles to be found. He did get a peanut butter and jelly sandwich, but continued to ask for a popsicle. Child Life stopped by to check on him (did I mention how wonderful they are?) and immediately went on a popsicle-hunting mission. A few minutes later, he was all set.

Popsicles make everything better

Child Life also gave him this adorable teddy bear - so cute!

A friendly bear is always good

Nolan was doing well and was released at 4:00 pm. Right into rush hour traffic in Manhattan. Oh, and the new security measures around Trump Tower. And also? Trump protesters. A perfect storm of awfulness for driving in a city that is known for its "normal" congestion. 

Manhattan traffic chaos

We needed to get to the Lincoln Tunnel. We wanted to get OFF THE ISLAND. So many streets were blocked and we could not get down many of the streets that would lead to the Lincoln Tunnel. In 1.5 hours, we had gone three miles.. in a circle. It was a nightmare! Nolan was a real trooper and was entertained by his Kindle in the backseat. He was really hungry, but we were stuck in traffic and there was nothing we could do.

We finally managed to make it to the Lincoln Tunnel. I was never so happy to see a tunnel in my life!

O, Lincoln Tunnel, I adore you

We made it to our hotel and Nolan was so hungry he was nearly in tears. We walked into the lobby, but it turns out the chef had called in sick that day so there was no food available at the hotel. With the traffic outside, we couldn't get to the restaurants on the other side of the freeway, so we went to the only restaurant within walking distance from the Hilton Garden Inn - a Dominican food place. The food was good, but Nolan was really tired and decided he wasn't very hungry after all. 

Not very hungry after all

After dinner, I carried him back to our hotel room and Dennis went to the car to get our supplies. Nolan was really wiped out, but was absolutely delighted to find a cookie bouquet waiting for him in the room from this amazing family. 

After a really long and stressful day, it was such a sweet and lovely thing to find!

I managed to get Nolan into his pajamas and he settled in to watch Shrek on the television. He seemed to be OK and fell asleep around 9 pm.

Resting after a long day

He was really unsteady and dizzy that evening, so I was grateful that he settled in and fell asleep. He did wake frequently through the night, but we finally just turned on the TV and allowed him to watch it as needed throughout the night. We don't allow much television at home, so this was a treat for him.

We were able to remove his bandage in the morning. I wasn't sure what to do about this, as we didn't have scissors with us. We tried using toenail clippers, but we were never going to get through it with clippers! We found scissors at the front desk and managed to snip it off. 

Ready to go home.

We were very grateful to head home. We stopped for breakfast somewhere in the Poconos and for lunch in Corning, NY. We made it home by 3:00 pm.

Nolan has been doing really well, though he is sore and still a little dizzy. Every day seems to be a little better. He is doing really well this evening and is a lot more talkative and energetic, so I think he will probably be close to "normal" tomorrow. 

He has been loving the special presents and treats. His aunt and uncle sent him a massive teddy bear, and he is pretty happy about the gift.

Giant bears are full of awesomeness

I am sure he will be back to school soon, though I am worried about roughhousing or Nolan falling, so we may keep him home this week. He has two half-days this week, anyway, so I'd rather he be fully recovered before sending him back to the germ-filled school (strep and everything else is going around at the moment).

We only have three weeks until activation day. I can't believe how quickly time is flying! We are very excited for him to get his new "ear!"