No Turning Back: CI SURGERY

In the early morning hours of September 11, we drove through the pouring rain to the hospital.  I was terrified, but tried not to show it.  After Brandt was called back to the OR prep room, it seemed to take ages before I was allowed to go back.  I raced back once I was summoned, trying to act supportive and not at all scared out of my wits.  He was hooked up to an IV, with compression socks and a strange contraption that kept squeezing his legs.  Dr. Awesome briefly stopped in to talk with us, confirming which ear he was operating on and letting us know that the surgery "usually takes exactly 90 minutes."  Then the anesthesiologist came in, and was very excited that this was Brandt's first time getting anesthesia.  I was not so thrilled about it. They wheeled him off to surgery and I struggled to hold it together.  But I didn't want to upset his parents in the waiting room, so after a few quick tears I dried my eyes and walked out of OR prep with my head high.

There was a woman sitting at a desk in the family waiting room, giving updates on patients' statuses.  After we had been in the waiting room over an hour, she announced to us that Brandt's surgery had begun.  I was disappointed because I thought he'd already been in surgery for a while.  I restarted the 90 minute countdown in my head.  I don't know how I managed to keep from driving myself crazy, especially with obnoxious soap operas playing loudly on the tv overhead, but I did.  Exactly one hour after the announcement, Dr Awesome came bursting through the door with a big smile on his face.  It took me so off guard that I jumped out of my seat and screamed, "Oh! You're here already!"  He told us that surgery was a success, and he was glad that Brandt "has such a big head, I had plenty of room to play around in there! Much easier than the one-year-old I implanted yesterday, her entire skull could fit inside Brandt's mastoid."  We thanked him profusely as he told us, "He's going to hate it for the first 3-6 months, then he'll be ok with it, at a year he'll love it, and at two years he'll be ready for another one."

Fortunately we have several friends and acquaintances with CIs, so I was able to send out e-mails with a lot of questions about the surgery and post-op.  So I knew that he needed to sleep in a recliner for the first few nights, that he needed to stick to foods that aren't too chewy, sneezing was going to hurt, and they kick you out of post-op recovery a good hour before you're actually lucid enough to really be discharged.  I still wasn't prepared for the state he was in when he was sent home though.  He could barely talk and his speech was very slurred.  Definitely still loopy.  The nurse told me, "Ok, I'm going to let you get him dressed and ready now!"  I told her that he obviously needed more time to recover and she said, "Nope, he's ready to go home!"  I tried to argue for more time to let him become lucid but she insisted that it was time for him to leave.  I had to stand him up and get him ready by myself, terrified that he was going to fall and split his heavily-bandaged head wide open.  At least someone wheeled him down to the pickup area and got him in the car for me, but I was pretty angry.  I drove home in our new car, only the second time I'd ever driven it, in the rain.  Thankfully by the time we got home, he was getting lucid and was able to walk into the house with my help.  It took awhile to get his pain medication and he was obviously hurting.  He had some trouble sleeping, probably from the pain meds, and was in some pain, but he was able to get up and about much quicker than I had expected.  

48 hours later, the bandages came off.  The incision site wasn't too gorey, and cleaning and slathering it with Neosporin twice a day was easy.  The swelling made his ear stick out a lot farther than the other ear, but I didn't say anything about it.  It's starting to go down so hopefully the ear will flatten back out. Brandt had trouble moving his head in the first week, so if I needed to get his attention he had to swing his entire body towards me.  I had to make sure to always talk to his left ear (which will change once he is activated, to always talking to his right ear.)  He was convinced that he had some residual hearing left in the implanted ear; Dr. Awesome said he had a 50/50 chance of retaining some hearing and we would know once the bandage came off.  After a few days, he wasn't so sure though.  But he was confident that he could function ok at work with only one working ear, so he has been back to work after a week and a half.

We still have another two weeks before activation, and it's torturing me to have to wait this long!  I'm so anxious to see what's going to happen.  We're keeping our expectations very low for the first six months at least, but I'm ready to get this show on the road.

1 week post-op

Out of the Gray Area, Into the Fire

It still shocks me to say this, but we have officially left the Gray Area.  I repeat, WE HAVE LEFT THE GRAY AREA! While I hated and resented the Gray Area, I had grown used to it.  I had accepted that we would be stuck in this limbo for years, maybe forever.  It was miserable and frustrating but it was what we knew.  We'd resigned ourselves to it, agreed to stop talking about Cochlear Implants and evaluations and all those what if's (and yes I pretty much abandoned this blog) because it was too hard.  I knew I couldn't get my hopes up yet again only to have them crushed.  I couldn't go through that again.  So I can't even describe the conflicted feelings I went through when everything changed a few months ago.

After the appointment with Dr. Awesome and Dr. Windsor last September, we started working with a new audiologist, Beth, and a new speech-language pathologist, Ariel.  Like our previous team from three years ago, Beth and Ariel thought that with a different brand of hearing aids and extensive listening therapy, Brandt could significantly improve his speech perception and would not need a Cochlear Implant.  They felt that Oticon hearing aids have a much better processing algorithm than his Phonaks, so they gave him a loaner pair for an extended trial.  We also started doing listening therapy, both with Ariel and at home.  Well, very long story short, six months with the new hearing aids and listening therapy didn't help at all and our communication was struggling more than ever.  The next theory was that he has Auditory Neuropathy, which Dr. Awesome and Dr. Windsor had suggested last year.  Beth conducted an Auditory Brainstem Response (ABR) test, thinking that it would confirm Neuropathy.  I don't even know why we were surprised, but the test came back as “probably no” on his right ear and “inconclusive” on the left ear.  She retested the left ear twice and it would never cooperate.

In May, Brandt had another appointment with Beth and Ariel.  We assumed it was just to return the loaner hearing aids, so I didn't bother going with him.  Having accepted that he wasn’t a CI candidate and there was nothing more we could do to improve his speech perception, we resigned ourselves to years more of struggling to communicate.  I was not at all prepared for the text message I received an hour after he should have been home from the appointment: “They say I am a candidate now. Want to get MRI and CT scan next. I’m talking to their financial counselor now about insurance.”  Umm, what?!  I just sat in stunned silence for a few minutes, reading the text over and over.  I thought he must have misunderstood what they told him and cursed myself for not being there.  It didn't start to sink in until he finally got home and explained that they had retested his hearing with the Oticon hearing aids and since he performed so much worse than ever before, he was now eligible for a CI as long as the brain scans did not find anything abnormal.  Another long story short, both scans came back normal.  

The next month, Brandt had his appointment with Dr. Awesome.  He entered the room saying “Well, they finally approved you!  All you have to do now is pick which ear and which device you want.”  Wait, hold on.  ‘All’???  No.  No no no. Not even close.  With all due respect to Dr. Awesome—and we respect him immensely—it’s not nearly that simple.  Not anymore.  Not after years of getting our hopes up only to have them crushed, years of emergency audiologist appointments to send back defective devices for the umpteenth time, years of theories for how we might improve our situation that never pan out.  Years of heartache, frustration, and disappointment.  I told Dr. Awesome that five years ago I would be jumping up and down crying happy tears at this news, but it’s so complicated and seems so risky now, we don't know what to think.  He chuckled, having heard this many times before apparently.  Brandt asked, “How can we know what is causing my hearing loss?  And how can we know that a CI will actually help?”  Dr. Awesome said that we can't know, his hearing loss is idiopathic (unknown cause)—90% of hearing loss cases have an unknown cause.  And there’s really no way to know if the CI is going to help the way we want it to.  You just have to do it.  Is this scary to anyone else??

Dr. Awesome said that it probably would have been better if Brandt had been approved four years ago, because then he wouldn't have had all this time to second-guess it.  And I agree, it would have made it much easier.  There wouldn't have been a question in my mind four years ago, I was SO sure that he would get approved and that it was going to improve our lives immensely.  I wished I could get that naiveté back, but it’s long gone.  We were weighing an option that has the potential for high rewards, but that possibility comes with a high risk.

So we went ahead and set the surgery date, September 11, with the understanding that we might back out at any time.  Brandt chose his company--Advanced Bionics, because its technology has the most connectivity, and his ear--the right one, since it had better data from the ABR test.  Then we decided to get a second opinion, because we were so on the fence about this decision.  I kept saying, "flip a coin, because I seriously don't know if I want you to go through with this or not."  We thought we had our CI center picked out for the second opinion, but after a series of problems over the course of 6 weeks, it fell through.  We didn't know if we could get another appointment before September 11, and the next available surgery date was in November, which was not going to work with our schedule.  It was 4:02 in the afternoon when I just started googling CI centers within a two-state radius and called them up.  Some were already closed for the day, others didn't have appointments until late September.  The first one to answer and have an appointment was UT Southwestern in Dallas.  Brandt faxed his medical records to them on his way home from work, and first thing the next morning he had an appointment for August 29.  Thirteen days before surgery.

We packed up and drove (and drove, and drove, and drove) to Dallas.  We made it through the thick traffic and construction and got to the appointment early.  First we met with an audiologist, who reviewed Brandt's tall stack of medical records: hearing tests, MRI, CT, ABR, notes from three evaluations and months of listening therapy.  She didn't do any tests of her own, since we already had plenty of data.  She said that she didn't think he has Neuropathy, and she thought he was a good candidate for a CI.  "On paper, I think you would do pretty well with an implant...but you do have a lot to lose, so it is a crapshoot.  I say go for it, if you can accept the possibility that it could or couldn't work.  It probably will, but it's still a shot in the dark."  This was actually much more positive than I was expecting, I honestly thought she would say something like 'Why are y'all even here, he obviously should not be a candidate and you're just going to have to suffer with hearing aids until you go deaf.'  Seriously, that's what I expected.  We had to wait two hours until the appointment with the otolaryngologist (I could barely eat my lunch) but it was well worth the wait!  He was a very upbeat doctor with a loud, booming voice.  He agreed that it doesn't sound like Neuropathy, just a "typical hereditary pattern with a dip" (which we discovered is called a "cookie bite," a term we had never heard before).  He told us, "I think an implant is a good idea for you, you're within both the FDA and Medicaid criteria--and Medicaid is more stringent than the FDA.  You have a much better chance to do better with a CI, because adults with progressive hearing loss do best.  It's a leap of faith, but you are struggling with these hearing aids.  I think you'll do very well, I say go for it!" We left the appointment in a daze, and on our long drive back home, we discussed preparations for before and after surgery.  

Brandt decided, "I'm going to have to do it eventually, my hearing is just going to keep getting worse, so I might as well do it now."  No more flipping coins, we were really out of that %#&*$@ Gray Area, jumping into the fire.