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!"

Surgery Date Set

Playing in Brooklyn

We returned to the Big Apple to see the surgeon with regard to Nolan's cochlear implant. The hearing tests already demonstrated he would be a good candidate for the implant, but this appointment was to determine if he was a good candidate medically. The staff at NYU is just amazing - truly, they are world-class. Dr. R. looked at Nolan's MRI and CT scan results from when he was a baby (normal anatomy). His anatomy is good, so there will be no issues with the device placement.

The one thing we were worried about is the gaping hole in Nolan's right eardrum. We have been told the hole is about 15% to 20% of his eardrum, and I had no idea what they were going to do about that. Would they need to do a second surgery to seal the eardrum? Would that preclude him from candidacy? I truly had no idea, and was hopeful it wouldn't be that big of a deal.

Fortunately, this is NYU and they are amazing, so there will just be one surgery and Nolan will have his tympanoplasty when the cochlear implant is placed. I am extremely grateful this will be a "one and done" surgery. This will also prevent more infections from happening to that ear, as most infections arise because he has a massive hole in his eardrum. We are very careful to keep that ear dry, but it will be a relief not to worry about water in the ear anymore.

Surgery is scheduled for November 11, which is fantastic as Nolan will miss less school (Veteran's Day Holiday). He will obviously miss some school the week after surgery, but we are trying to keep the missed days to a minimum.

NYU  Medical Center

He will be "switched on" December 6 and December 7. He will get his first MAP (program) on December 14.  Hearing with a cochlear implant is a process, and the programming has to be adjusted frequently in the initial stages. The sound will likely be strange for a while, but with time and therapy his brain will adjust and the sound will normalize.

We drove home immediately after the appointment and made it home by 1:00 am. Fortunately we won't return until November 10, so we have some downtime before the crazy travel schedule hits again!

Goodbye, Hearing - Hello, NYU

Life is insanely busy and I don't often update Nolan's blog - but here is my yearly post (ha). Nolan is now 9 years old. We have had an insanely cool summer, visiting Quebec City, Tadoussac to see beluga whales in the wild, and hiking the via ferrata in Ausable Chasm.

Last December, we went to Cleveland Clinic to evaluate Nolan's hearing. At the time, there were some small changes in his left ear (his good ear), but the right ear was largely stable, ranging from 60-90 dB (moderate to severe). His aided thresholds were in the mild-moderate range.

His speech perception using live voice was 80% in the "bad" ear and 100% in the good ear. We knew we would need to upgrade his hearing aids from Bolero Q SP's if his hearing degenerated anymore, but also knew that if his right ear lost more, he might be in the range for a cochlear implant.

Over the summer, we were getting more "whats" and non-responses from Nolan. If he was looking at you, he could understand you. If he wasn't looking at you, he sometimes wouldn't detect that you had spoken. The left side still seemed to be getting sound, but the right ear appeared to have great difficulty. I did the Ling sounds for just the right ear, and the only sound he picked up was "ah."

I knew this meant he had lost additional hearing, and made the call to NYU's cochlear implant program. I wanted an evaluation to get him into the system just in case the right ear had dropped. If he didn't qualify, that would be fine - but I had suspicions that his right ear was losing residual hearing quickly.

They reviewed his audiogram from last December and said he wouldn't be a candidate with that audiogram, but considering his history we should bring him in for an evaluation. We had hotels booked and made the 7 hour drive to New York City (this drive takes longer than 7 hours with traffic, but is still well worth the trip).

NYU performed a full cochlear implant evaluation for Nolan. We first met with the LSLS (Listening and Spoken Language Specialist) and the audiologist who would be testing Nolan's hearing. We explained that we knew he was not a likely candidate, but preferred to err on the side of caution since he had been having difficulty lately and is in the fourth grade - we don't want his academics to suffer if the left ear decides to take a sudden dive and we lose his "good" ear.

The testing was broken up into three days. Each day, Nolan sat in the booth for 90 minutes and performed various listening tasks. Day 1 was the unaided audiogram. I don't have a copy of the audiogram yet, but my suspicions were confirmed. The left ear is largely where it was at Cleveland Clinic (though his speech reception has declined slightly), but the right ear is now profoundly deaf. His best threshold was at 90 dB in the low frequencies, dropping to over 100 dB in the highs (to no response at 8000 Hz). Nolan's speech reception was 48% in the good ear with speech at 85 dB, and was very poor in the right ear (24% at 95 dB).

Suddenly we were no longer "getting into the system," but entering true cochlear implant candidacy evaluations. Cochlear implant candidacy requires a lot more than unaided testing, so we would return the following day for testing in the aided condition.

Nolan really wanted to see the Statue of Liberty while we were in NYC, so we left the clinic to explore Manhattan.

 Taking a cruise to see Lady Liberty

At the World Trade Center on September 12 

We returned to the cochlear implant clinic the following day to repeat a lot of the previous testing, this time with Nolan's hearing aids on. The audiologist said words and sentences, but this time the volume was at 60 dB instead of 95 dB, since he had hearing aids on. His left (good) ear was fantastic - he was able to get a score of 84% in that ear. The right ear, unfortunately, only scored 36% for words and 27% for phonemes, even with a hearing aid on. His right ear, even in the perfect silence of the sound booth, just wasn't really hearing clear speech. His candidacy looked like a surer thing, but they wanted to try one more thing first: more  powerful hearing aids.

Nolan has super power aids which are supposed to accommodate a loss of up to 110 dB in the high frequencies, but he was at or beyond that level unaided. We needed to determine if the Naida UP (the most powerful hearing aid on the market) would bring his aided hearing into the desired range. 

We left the clinic to explore more of New York City, including the Natural History Museum. 

Dinosaurs!

Checking out Times Square

The third day of testing would be the determining factor for whether or not Nolan would qualify for an implant. Nolan had language testing performed (his language skills are insanely high, due to very early intervention and a mother that never shuts up   extensive exposure in the home environment.

He was brought back into the booth, this time with the Naida UP's. The UP hearing aid brought his left ear into the mild range for hearing levels and he obtained 100% speech recognition with it. We were thrilled! The right ear, however, did not fare as well. He was aided to the mild/moderate range with the Naida UP in the right ear. He did improve his speech understanding with the Naida UP, but was still missing half of the speech signal, at 60 dB in quiet (live voice).

This is a tricky situation - as he might do well with the Naida UP hearing aids, but his hearing loss is progressive, the right ear is already profound, and if we continue to wait the left ear will likely drop - leaving him with very poor hearing while trying to navigate the fourth grade. It is also likely the right ear will continue to drop, so we would be spending a significant amount of money (near $8000) for a very brief period of time. There is no telling when the left ear will drop, but it always trails the right ear by a few months to a year. We decided that if he was a candidate, we would proceed with implantation of the right ear. This will give him a "stable" ear (once rehabilitated) in case the left ear decides to take a dive on him in the future.

It was decided that Nolan would be a candidate for a cochlear implant in the right ear, and we were able to look at the three major brands who manufacture the device. Each brand is slightly different, but all serve the same function and operate in the same manner. It is a bit like buying a car - all are reliable and will get you to your destination, but the features vary from model to model. We took home a ton of literature from that appointment and returned to our home in Western NY to figure out which brand we want our son to have - for the rest of his life. While we know they all work just fine (cochlear implant centers wouldn't use a brand that didn't work), we need to determine what the best brand would be for Nolan.

We are returning to NYU tomorrow to meet with Nolan's surgeon. We are bringing Nolan's CT scan and MRI from when he was a baby so we won't have to repeat those tests. The process is long and involved, and we have to get insurance approval, the surgery scheduled, turn on the device, program the device, and do a lot of auditory-verbal-therapy to help his brain learn to use the signal generated by the implant. While it will take some time for him to adjust to it, his hearing will be better with the cochlear implant than it will be with his hearing aid.