Post-OP Appointment

Today was my post-OP appointment! I kind of messed up by sleeping on my right side last night. I woke up with the implant site pretty sore. It hurt to touch the implant, whereas before I could touch it all I wanted. By the time we got to Irvine the area around the bottom of the implant was a little swollen and puffy. The Surgeon was 99% sure it was not infected, but would rather be 100% sure, so he prescribed a round of a different, stronger antibiotic. It won't hurt me if I don't have an infection, and could prevent a hospital stay if it is infected. I was also instructed to stop applying Neosporin to the incision, as it was healing but was a bit red and rashy. I'm technically allergic to Neosporin, and am supposed to use Bactracin or Polysporin, but it's not an issue when used short-term for cuts and such. I hadn't thought about it so many years since I've had no reason to use it long-term all this time, and forgot about it. So that was my bad, too! And here I thought I was recovering wonderfully, lol! I am, actually, in all aspects but these two. So, one more week of antibiotics and I'll hopefully be in the clear. I'm still set for activation on March 20! We talked to the Surgeon about going bilateral, and he explained that when is up to the CI Audiologist. She will decide when I'm ready based on my progress with this implant. He said they generally do the bilateral surgery between 6-12 months after the first. So a likely goal would be Christmas break. Since I'll already have one (working) implant, I probably won't take time off from school to get the surgery. It won't be as urgent next time. As of now, I won't see the Surgeon again until Pre-OP for the bilateral surgery, unless I have continued issues with the implant site. All my appointments from here on out will be with the CI Audiologist. CAN'T WAIT to be activated!!! I asked my Surgeon if I got to take my processor box home today. It's a giant box filled with all kinds of goodies! Every CI Center is different; some let you take it home beforehand, others make you wait until activation. My Surgeon had me pegged, though, and said they prefer not to because they don't want patients putting on their processors while recovering :P My Mom was like "He knows you!!" The processor wouldn't work straight out of the box, but apparently people play with the different ways to wear it, putting the magnet off and on, etc. I so would do all of that, lol! So, no box for me yet! Guess I'll have to wait like most! Until next time! ~Alex

Incision Day 8

We were shocked to see the GREEN mountains just after leaving home!!

Chillin' wit my cool socks

Cool yet creepy fog at the bottom of the Grapevine

Looks like were entering some creepy movie

Recovery

So, here I am, 4 days post op! I'm doing really well! The first day was the worst pain-wise, which was surprising as I had heard days 1-3 were not that bad and day 4 was the worst. But since when do I follow norms? Haha! Day 2 was a little better than day 1, in that the jaw pain was mostly gone. That was the worst part of the pain, so this provided a lot of relief. I couldn't look up or raise my eyebrows without pain, so that was a lesson to be learned. Moving my facial muscles was tricky, as was moving my head. So I mostly didn't talk or turn my head. My pain was mostly in my inner ear, at the jaw joint, and a bit behind the ear at the incision. My neck was very sore for a combination of reasons, one being having to sleep with my neck to the left. A hot back soothed this. The tinnitus was very loud and high-pitched, the train had disappeared. I spent the day watching Switched at Birth. I got the season 1 DVD for Christmas and was saving it for CI recovery. My stomach was fine for eating, but opening my mouth and chewing still proved to be difficult. My dinner consisted of french fries and a chocolate shake (yeah, I'm spoiled). I slept like a rock, as I had the night before. Mom woke me up for my pain meds and I would go right back to sleep. Day 3 I had a lot of itching that I couldn't reach due to the bandage. The jaw pain was gone, so the pain was localized in my inner ear and behind the ear. I remember being asked by Mom what my pain number was, and telling her it was a 4. I discovered I needed to clean my aquariums. The lack of daily maintenance had left them in need of attention. I sent 3 hours doing that. I took it very slow, and Mom figured out a way to roll the water buckets out since I'm not allowed to lift more than 10lbs right now, and Mom isn't allowed to lift that much either. Discovered one of my baby frogs had an injured foot and got him set up in his own little container. Then I finished season 1 of Switched at Birth. I ate a variety of food, including multiple yogurt popsicles. That evening, we decided to break the rules by about 12 hours and go ahead and remove the bandage. It had been getting increasingly loose as the day went on, we assume because of the swelling going down. We tried tightening it but that just caused a headache. The bottom of my ear was exposed so we took it off. I was happy to discover that my incision was in the crease of my ear, so my scar will be well hidden (not that I was overly concerned about it) and they barely shaved any hair. The incision was not as bad as I thought it would be having looked at pictures online. I was surprised to see that my ear was definitely lower than the left. My reaction was to walk into the living area and exclaim "They put my ear back on crooked!" to which my Dad asked if they really took my ear off. I started to explain to him but my Mom stopped me, Dad doesn't like gross stuff. But anyway, they did half remove my ear. It was detached from the bottom of the top arch, to the top of the bottom arch. It was then folded over onto my face while they did the surgery. So, when they put it back, they definitely failed to do a symmetry assessment, lol! The lobe on that side is a lot looser, so it seems they didn't pull it high enough before sewing it. Oh well, I guess I'll just ask them to do the same when they implant the other ear, then they'll be even, lol! Anyway, we cleaned the incision per instructions that night (cotton swabs and peroxide). Very weird feeling as the top half of my ear was numb. Covered it in Neosporin and called it a night. I was afraid I would try and roll over in my sleep, but I slept like a rock and didn't move all night. Mom didn't wake me up for my meds the next morning to see how long I could go. I was fine at first but once I was up I got nauseous and my pain went from a 4 to a 6. So we decided to not try that again anytime soon. Day 4 was pretty good. Once the pain went back down to a 4 it was consistent all day. Sometimes it felt more like a headache or migraine than surgical pain. I ate pretty good and even got 2 homework assignments done. Took another bath and relaxed. I stayed up watching a movie, and toward the end of the movie discovered my hair was filled with ash-like dry blood. It was disgusting. I couldn't go to sleep knowing that, so I broke another rule and washed my hair (wasn't supposed to until day 5). I washed and combed it 4 times before I stopped seeing blood. It felt so good. My whole head felt like a weight was lifted from it. It was a huge step up in recovery I feel. It made me feel normal and on the mend. I was comfortable moving my head around, moving my facial muscles, etc. I was no longer stiff. I went to bed feeling pretty good, and woke up still feeling good. I would rate my pain at a 2, sometimes 3. My incision itches like mad. My pain is more like a headache/migraine than surgical pain, and is located at the incision. I'm gaining a little bit of feeling back in my ear, so that's cool. The tinnitus has calmed down and the train has returned. Planning on returning to school tomorrow, with my Mom driving me. Excited to get out of the house!

WARNING: Don't scroll any further if you don't do well with gross stuff!!!
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Incision on Day 3

Incision Day 5

6 paperclips :P

Surgery!

Awake eating crackers with my Vicodin so thought I'd update!

We arrived in Irvine the evening before surgery. The drive was full of traffic but we expected it because of the time and area we were traveling in. We checked into our hotel and then went to pick up takeout at The Cheesecake Factory, which we passed on our way in. This is a memory from back when I first knew my Mom. She took me there for my 22nd birthday, along with my GriefShare leaders. We didn't know they existed outside of Houston so we HAD to eat there! We took it back to the hotel so that we could watch NCIS. I checked in at Disneyland on Facebook (we were within walking distance!) to be funny. Afterwards, I took my pre-surgery Hibiclens shower and we turned in. I actually slept pretty well until about 4am. Up at 6am to get ready for surgery! Another Hibiclens shower and we packed up and loaded the car. We were only 5 minutes from the hospital so it was a quick drive. Left the car with Valet (free for outpatient surgeries!) and headed upstairs. Signed some paperwork and waited a bit, then got pulled back. Changed into my gown, funny socks and hair net, and moved into pre-OP. I had a few sweet nurses to get me ready for surgery. Met both Anesthesiologists, saw the surgeon, and saw his resident. My surgery was scheduled for 9:45, but delayed until 10:15 due to the Dr. overlooking my allergy to Penicillin, which meant the antibiotics on my IV (not turned on yet) and the antibiotics that had been prescribed for home were both cousins of Penicillin and not safe. So we had to wait for them to change the IV antibiotics before we could get started. I remember the Anesthesiologist giving me something to relax, and when i started feeling it i told my Mom "I'm starting to go, tell me bye!" Haha. As they wheeled me off I said back to her "I'm coming back as a Bionic Woman!" hahaha! I remember being in the OR almost "gone," when a nurse tried to take my stuffed Pooh and Piglet. I shot my eyes over to her and i read her lips saying "Oh, not yet!" That's the last thing I remember until after! I was in a lot of pain when I woke up from surgery. The nurse slowly gave me 2 doses of IV pain meds before the last one finally took the edge off. My golden response to anesthesia held true: no nausea whatsoever! I was downing ice chips as fast as my Mom would let me. She was being very stingy with them and even took them away at one point. My first words after waking up were in response to this, saying "Killy potty!" That's a funny way of saying party pooper for anyone who doesn't know :P I believe we left a little after 2. I didn't sleep the whole drive because my jaw was killing me. I have problems with that jaw hurting anyway, and it used to pop every time I opened my mouth up until I got a dental bridge on that side of my mouth about a year and a half ago. So no surprise it was so painful, but of course that doesn't help it feel better! The vibrations of driving and the stop-start in traffic and in town made the pain worse. I ate an applesauce pouch at the beginning of the drive to get something in my stomach, then I snacked on saltines the whole way home on and off. We stopped to use the restroom at one point (boy I must have been a sight! I tried not to notice the stares but it was impossible lol) and Mom got me a small sprite to sip on. The water seemed too heavy in my stomach. Got home about 5:30. I was very glad to arrive home! I took a 2 hour nap and then ate some ramen noodle soup. Uploaded pictures to Facebook and then wanted to lay down in bed. I watched a couple TV shows while eating popcicles (the popcicles I never ate after my tonsillectomy in December haha) and went to sleep at about midnight. Cody woke me up just before 2, pawing my arm to get back under the covers. This was so sweet to me, because he never sleeps with me all night anymore. He waits until I fall asleep and then he moves to his bed in the kitchen or to the living room. So the fact that he took the time to wake me up (not easy as his way of getting attention is whining, I guess he figured out the need to paw me lol) made me feel good :) It was almost time for meds so I got up and took them. And here I am eating saltines updating here! I'll post more as I move along in my recovery. I go back to see the surgeon on 3/7, and activation is 3/20!

Insurance Approval and Surgery Scheduled!

Got word on Tuesday that the insurance approved the surgery! We were given the option of having the surgery as soon as February 27 or March 6! I jumped at February 27 as that's only 1 week away! I also got the first of two Pneumococcal Meningitis vaccines that I need prior to surgery (CI implantees are at a slightly higher risk of developing this type of meningitis). WOWzers was that shot painful afterwards! Much worse than after a Tetanus shot! I have to get the booster in 8 weeks as well. Yuck! I'm very happy to get the surgery out of the way before midterms. I won't miss anything important at school, and I have all of my subs lined up for my 3 weeks off of work (starting tonight). All of my Professors are being very understanding and supportive. I will only miss one in-class assignment that can not be made up, but it's a very tiny amount of points and I was assured it would not affect my grade at all. For my other classes I have already begun handing in homework early that would be due while I am out. I plan to have it all finished and turned in by Tuesday. If I have time I want to get another week ahead beyond that so that I'm not doing homework while recovering.I took off of work tonight so that I could get ahead on some assignments, and took off on Sunday so that my Mom and I can attend the San Fransisco BEA Social! This is a gathering for those who have AB implants, who are in the process of getting, who are candidates, etc. They do it quarterly and I will get to attend it just days before my surgery, just in time! The men and women on the message board for AB are absolutely wonderful, and many of them will be there. It will be nice to put faces to screen names! It is a 4 hour drive in the opposite direction of UCI where I'm having my surgery. Mom and I will split the driving so it's not so hard on her come Tuesday and Wednesday when she'll be doing all of the driving. Although now that I type that I realize that there's no reason I can't drive us there! We will be driving to Irvine on Tuesday, the day before surgery, after I finish my classes and a tutoring appointment. So we'll leave at approximately 3pm and be there in time to have a late-ish dinner. Don't know my surgery or arrival time yet, but I do know they will try and get me in as close to first as possible since the procedure is outpatient and we have a 3 hour drive home, not including traffic. Praying we can get home before dark as it stinks major to drive down the Grapevine in the dark! I will return to UCI the following Thursday, March 7, for my post-op appt. After that, I will wait up to another 5 weeks before I can be activated! This means that I will be hearing before the semester ends! I will also be hearing before my Uncle's retirement party in D.C. in May, and a tour of Gallaudet University while were there! How much I will understand is unknown but I have high hopes due to my hearing history.

SO! On the list to accomplish before Tuesday is to;
1. Finish all of next week's homework and turn it all in
2. Do even more homework if I have time
3. Buy a button-up pajama shirt for post-op (not allowed to lift your arms over your head post-op)
4. Buy "Floaties" for my glasses, which will keep my glasses on my head despite the giant cup and bandage over my ear.
5. Pack a "Post-OP Car Ride Home" bag
6. Pack an overnight bag
7. Pack a "just-in-case-I-have-to-be-admitted-overnight" bag (haha)
8. Get post-op prescriptions filled
9. Anything else my brain can't think of at this time of night :P

I probably won't  get to writing my post about why I chose AB (Advanced Bionics) before surgery, but I will definitely get to it no later than Spring Break :) AB is years ahead of the other 2 cochlear implant companies and I am very blessed to have had the choice in which brand I wanted. In that post I will talk about the processor that I ordered and the additional one that I will get once it's approved by the FDA.

That's all for now, need to finish a homework assignment before I can call it a night! Thanks for everyone's support :)

Meeting the Surgeon & Pre-OP

Today was a very productive day for us at UCI! We went down to meet the Surgeon to talk about getting the implant. We had been squeezed in by the Audiologist so were prepared for a couple hour wait. I almost finished a homework assignment when we got pulled back, a mere 15 minutes after our appointment time! Someone took my vitals and put us in a room. Soon after the Surgeon's Resident came in. She asked a bunch of questions, as well as went over all things CI surgery. What he will do, risks, discharge, activation, etc. She then took a look in my ears and got the nasty surprise of my jacked up eardrums 4 weeks after repair. I got to watch on a TV screen, much clearer than using a hand mirror and otoscope :P It was pretty gross, so she suctioned a lot of the blood clots out. Then she decided to leave it for the Surgeon. He came in a bit later and left once he realized the Resident had taken my CT and MRI CD's to upload them. He went to look at those and came back. He said they looked great; nothing to contraindicate an implant. He went over some things about surgery and post-OP, and asked if I had decided which implant I wanted. I have decided on the Advanced Bionics implant for many reasons (which I still need to post about!). He took a look in my ears and got more blood clots out. Then he decided we would do all of my pre-op stuff that day to avoid more trips (we live 3hrs away). The pre-op nurse came in and went over the pre-surgery and surgery-day stuff. She tried to get the Audiologist in so we could choose processors, colors, cable lengths, etc, but she had just started a hearing test so we will be doing that by email. She sent us over to Radiology to get a chest x-ray done. I have asthma and the Surgeon wanted to ensure my lungs were clear before surgery. I had to put my pigtails in a ponytail on the top of my head for the x-ray, and most definitely looked like Alex-Lou-Hoo! The x-ray techs got a kick out of it! They were very interested to hear about the CI and how I would hear with it. Then we went to the Lab for, well, labs, haha. My lab tech loved my Piglet (who has accompanied me to both of my appt's)! Even said Bye to him when we left (so my Mom says ha)! Then it was time to get back on the road! Traffic, traffic, more traffic, and a stop at In-n-Out later, we made it home safe and sound, feeling very blessed :) Right now were waiting for insurance approval, and then we will schedule the Big Day! Were shooting for March 20 (he only does surgery on Wednesdays). Spring Break is that following week, so I will get the required week of down-time, plus a few days, and only miss 2 days of school. Activation will follow 6 weeks later! I will be activated in time for my brother and sister's visit, as well as my Uncle's retirement party in DC! Super stoked!!

Officially Approved!

So today was my appointment at UC Irvine with the Audiologist for my CI evaluation. UCI is 3 hours away, so each appt will be an all-day event! It was raining, foggy and just generally yuck the whole way there and back but God had his hand on us :) First she did a pure tone test with my hearing aid in. Came in and checked my hearing aid with a modified stethoscope, changed the battery, then did the test again. Then she did a test I've never had done. She put a sensor thing in my ear. It had a cord running from there to a hand-held device I held. It tested something and gave me a 2.0 for my left ear and a 4.0 for my right ear. Whatever that means, she didn't tell me lol. It wasn't the ear drum pressure test, my ENT requested she skip that due to my ear drum repair less than 2 weeks ago. Then she did a speech test with my hearing aid in. These were pre-recorded sentences. I didn't hear any of the words let alone understand them. She came back in the booth after a few minutes to confirm I wasn't hearing anything and my response was "I didn't know you had started." Ha! She finished the test and then had me do a pure-tone test without my hearing aid, and then a bone conduction test. Finally she took me out and did a live speech test with my aid in. She asked me questions with her mouth covered, waited for a response, and then asked again with her mouth un-covered. This was with her less than 2 feet away from me. I got no words correct with her mouth covered. I got "eggs" but it was actually "legs." I also got the vowels out of two words (oo and ay). I got all of the questions with her mouth un-covered since I'm a speech-reading Ninja like that lol! Then we were done with the testing! She informed me that I was a great candidate! She complimented my coping skills and said they will be of great benefit to me during the 3-6 weeks between surgery and activation, and also in learning to hear with the CI in general. She went through the process prior to surgery, risks of the surgery, expectations following activation, follow-ups for re-mapping (changing the program on the CI as my brain learns), etc. She indicated that my right ear will be implanted, as my left ear has been "dead" for 16 years now and has never been aided. She made us an appointment with the surgeon for February 7. He will take a look at my MRI and CT. The Audi doesn't think there are any repair options for my ears, but he will confirm or deny that at the appt. In lieu of repair surgery, we will proceed with the CI! She told us it is usually one month from insurance approval for surgery to happen. Regardless I have to wait until Spring break or Summer break so I don't miss too much school! She gave me an information packet on Med-El (I already have packets from Cochlear and Advanced Bionics) so that I can start thinking about which CI company I want to go with. I'll have an appt with her to go over it all before deciding. As of now I'm leaning towards AB. I don't know if my insurance has any restrictions on the companies, so we'll have to see about that as well. From everything I've read you get to decide which one you want barring any physical defects of the cochlea that would require you to go with a certain company's electrode. I'll make a post soon comparing the 3 companies' implants and processors. As we checked out she let me know I would need a Meningitis vaccine prior to surgery and that the surgeon would give me the order for it. This is because there's an increased risk of Bacterial Menengitis following the CI surgery.

We were very happy with our experience at UCI! A gazillion times better than at the last clinic! We love the Audiologist, she is so awesome! I'll have a minimum of 6 appt's with her in the next year and a half, so that's important! Now we just wait until our appt with the surgeon!

Feeling incredibly blessed today!

We made it!

 Cool pic of the LA mountains on the way home.

Here we go!

So, I'm new to the blogging world. But as I've searched for blogs about others' CI (Cochlear Implant) journeys, I've realized I would love to create my own. For myself; to catalog my journey, and for others; to help them should they embark on this journey some day.

Some background: I was born hearing. I lived in an abusive home and suffered Traumatic Deafness at 8 years old due to a head injury. At 10 years old, surgery was performed to repair the ossicles (ear bones). This returned to me some hearing in my right ear. This remained stable for many years. At 22, I received my first pair of hearing aids. They opened up a world of communication, which had always been difficult for me. In the last year, however, my hearing has declined greatly. I am now Deaf again. I received a much more powerful hearing aid at the beginning of this summer, which helped me cope with this decline. In the last couple of months, however, I have noticed more decline. I have not been back to the Audiologist to see exactly how much, but it is on my To-Do list. In the Spring of 2012, I had begun pursuing a Cochlear Implant. We made an appointment at a highly-regarded clinic in Los Angeles. At my first appointment, they chose to do another Audiogram. This Audiogram came back saying I could hear twice as well as I could. Impossible seeing as my hearing aid, set at an astounding 120dB, would have caused me great pain if my loss was what they determined it to be. To sort out this confusion, they scheduled me for an ABR test (Auditory Brainstem Response). This test requires no response from me, my brain tells them what I hear on its own. I later found out they ordered this test to prove I was faking being deaf. So, we returned for the test, and the results showed I didn't hear a thing. Still convinced I was a faker, they scheduled me to come back and take the same test again. Um, nope! My Mom and I decided on the way home that we were through with them. We did some more research and scheduled an appointment elsewhere. Before the appointment, however, I decided that I wanted to postpone getting a CI for a couple of years, so that I would not be deterred from becoming fluent in ASL. That was many months ago. I have very recently changed my mind. My brother, sister, brother-in-law, and my brother's long-time girlfriend, live out-of-state and are visiting for Christmas. This is the first time I've seen them since my hearing took its dive back in June, as well as again in November. This time has made me realize just how much I'm missing. I cannot hold a conversation that is more than one-on-one or one-on-two. This leaves me missing out on a lot of conversations, as well as being perpetually lost. Outside of my family, I have stopped attending my bible study due to the great difficulty of communicating. I have switched to attending the Deaf Church within my home church because I simply couldn't hear anymore. I'm still lost in Deaf Church as I do not yet know enough ASL to fully understand, nor can I hear the Interpreter. In the future, I want to be a Foster Parent, as well as run a home Preschool. These things will be greatly difficult without the ability to communicate effectively (I can lipread but not without at least some auditory cues). This has left me at the conclusion that I need to continue my pursuit for a CI. I want to stay connected to the hearing world, while also continuing to connect with the Deaf world. As I was born hearing, I fight between wanting to be completely deaf and immersed in the Deaf community and wanting to he completely hearing so as not to feel disconnected from the majority of the people in my life. I have finally decided that I can have both. I can connect with the hearing world through a CI, and simply remove it whenever I feel like not hearing anymore (I put my hearing aid on Mute quite frequently).

So, here I stand. At the beginning of this journey yet again. We will not be scheduling surgery until the Summer due to the recovery time, and will be using this semester to get through all of the testing and evaluations. I will keep this blog updated as things progress!