Hello. It's me Evan again. I just got done talking with the doctor and there were some complications inserting the implant into her right ear. There was a total of four implants, two for each ear in case of any problems. Two of the implants were damaged when trying to insert them. The third was able to go in just fine and is currently being tested. All is well with that one and Kristel is also doing well. Since there is only one more implant device left, without another backup, the doctor wants to play it safe and only do the one ear. He said it is possible to still do the other ear a few months down the road, but that won't be an option since our insurance runs out at the end of the month. My new insurance provider that we're forced to change to with my employer doesn't cover cochlear implants.
The doctor explained that the initial problem was that the drilled hole wasn't large enough and the cochlea was in a different position than normal I guess. Not sure how the implants became damaged. So the surgery took twice as long as planned and should have been done with both ears at this point. I am just glad Kristel is doing fine and the implant in the one ear is also doing fine.
The doctor is stitching her up and will dress the bandages and will soon be in recovery. She'll be in recovery for at least an hour before going home. There may be a possibility she may need to stay overnight, but don't think it will happen. If we do go home tonight, the doctor wants to see her in his clinic tomorrow.
On a side note, the doctor seemed really nervous and almost shaky to a point when talking to me. I probably would be too, but I don't know how he does what he does! I certainly wouldn't be able to...but it made me question his experience with this procedure and am not too fond of the possible "educational/learning" surgery for the doctor (i.e. that's good to know for next time).
Just got done visiting with the doctor again. Kristel is in recovery and awake and responsive. I will be going to see her soon. More to come...
Tuesday, December 20, 2011
Surgery
Kristel asked me to keep her blog updated today. Hello, I'm Evan...Kristel's husband. We were to arrive at the hospital today at 10 a.m. for all the prep stuff, which took about an hour. By 11 a.m. we were ready to go, but the surgical room that was reserved for us was still in use for an "emergency repair" of another patient/doctor. The nurse said it would probably be about another hour before they would be able to get Kristel in for surgery. Almost two hours later of waiting, the anesthesiologist came and got Kristel and took her in to begin the surgery!
Our doctor blocked out 7 hours of his day for the surgery, but is only planning on 4-5 hours of actual time to perform it. He will be starting with the right ear and if all goes well he will then do the left ear. I am still amazed that this is an OUTPATIENT surgery and will be taking her home tonight. It kind of freaks me out and have had butterflies for the past week. I've been more nervous than Kristel, who has been totally calm and collected since Sunday. We both feel that everything will go as planned without a hitch. She's been in surgery for about an hour now so still plenty of waiting time to go!
Our doctor blocked out 7 hours of his day for the surgery, but is only planning on 4-5 hours of actual time to perform it. He will be starting with the right ear and if all goes well he will then do the left ear. I am still amazed that this is an OUTPATIENT surgery and will be taking her home tonight. It kind of freaks me out and have had butterflies for the past week. I've been more nervous than Kristel, who has been totally calm and collected since Sunday. We both feel that everything will go as planned without a hitch. She's been in surgery for about an hour now so still plenty of waiting time to go!
Morning Of
Good nights sleep. Check.
Presents. Wrapped.
Christmas cards. Sent.
Stockings. Full.
Laundry. Done (well, mostly done).
Bathrooms. Clean.
Kitchen. I have no control over!
Kids. Cuddled.
Hair. Washed (for the last time for 7 days)!
Feeling. Calm.
Surgery. Noonish? Checking in at ten.
Love to all!
Sunday, December 18, 2011
My Fears
Surgery is quickly coming up. 2 more days. I'm 80% excited and 20% freaking out. Well, I'm not really freaking out. But my thoughts are definitely consumed by what is coming. I really feel that the implants will be able to help me hear better than how I am hearing today. I don't expect to ever hear like a "normal" person does. But I welcome anything that's better. Even if I could hear more effectively again with my assistive listening devices. I do not feel they help very much anymore though I continue to use them. Sounds are just become less and less distinguished. I can hear sound, I just often can't make sense of them.
This last week was my turn to teach Joy School, my daughter's preschool group. There are 5 kids in the group. I'll be totally honest. I didn't hear any of them for the entire 2.5 hours. Except my daughter. I have trained her on how to speak to me. The other kids, bless their hearts, just couldn't make sense in my head when they spoke. I used my contego and it amplified their voices and amplified noise, but it did not make it clearer. All of a sudden, I felt afraid that getting implants would just make everything louder, not clearer. My device always gives me a headache in group situations. The amplification of the noise is painful. But usually, the benefits outweigh the headaches. I've had a headache ever since it feels like! I'm so needing my ibuprofen (my drug of choice :) but I can't take it the week before surgery. I think I might give in today though and take a couple anyways.
I attended church this morning with my sister and her kids. Her kids were all baptized yesterday and it was wonderful! My sister's ward (the local congregation) had their Christmas program today with several musical numbers. I hate musical numbers! No offense to the musicians of the world, but music is not pretty to me, even spiritual music. Music is painful to me. Since I already had a headache, listening to those screeching voices and piano just magnified my head pain. Why didn't I think to just turn off my hearing aids????
On the way home, I asked my mom, whose hearing is worse than mine, what she thought of the musical numbers. She says she's always loved music but choirs don't do much for her as she can't understand the music. I asked her if it annoyed her or just felt like noise. She said that never has a musical number bothered her. She was shocked it gives me headaches. I don't understand why it's different for us. Music sounds like screeching to me. In no way does it sound nice or even neutral. I can tolerate the kids cd's for a time but they are simple songs. Twinkle Twinkle Little Star does not give me a headache. I guess if you add any depth to the music or lyrics, it just becomes noise to me and noise is not pleasant!
Another fear I have is that because I haven't trained my brain to understand music, that I won't be able to understand music with implants. Music is very important to my husband and I feel like my distaste of it has lessened music on his priority list. That makes me sad. I very much want to train myself to appreciate music so that it can become important to him again.
I also fear the actual surgery. It's kind of a big deal. But again, the benefits are going to outweigh the risks so it's going to be worth the discomfort for a couple of weeks. I can do this!
This last week was my turn to teach Joy School, my daughter's preschool group. There are 5 kids in the group. I'll be totally honest. I didn't hear any of them for the entire 2.5 hours. Except my daughter. I have trained her on how to speak to me. The other kids, bless their hearts, just couldn't make sense in my head when they spoke. I used my contego and it amplified their voices and amplified noise, but it did not make it clearer. All of a sudden, I felt afraid that getting implants would just make everything louder, not clearer. My device always gives me a headache in group situations. The amplification of the noise is painful. But usually, the benefits outweigh the headaches. I've had a headache ever since it feels like! I'm so needing my ibuprofen (my drug of choice :) but I can't take it the week before surgery. I think I might give in today though and take a couple anyways.
I attended church this morning with my sister and her kids. Her kids were all baptized yesterday and it was wonderful! My sister's ward (the local congregation) had their Christmas program today with several musical numbers. I hate musical numbers! No offense to the musicians of the world, but music is not pretty to me, even spiritual music. Music is painful to me. Since I already had a headache, listening to those screeching voices and piano just magnified my head pain. Why didn't I think to just turn off my hearing aids????
On the way home, I asked my mom, whose hearing is worse than mine, what she thought of the musical numbers. She says she's always loved music but choirs don't do much for her as she can't understand the music. I asked her if it annoyed her or just felt like noise. She said that never has a musical number bothered her. She was shocked it gives me headaches. I don't understand why it's different for us. Music sounds like screeching to me. In no way does it sound nice or even neutral. I can tolerate the kids cd's for a time but they are simple songs. Twinkle Twinkle Little Star does not give me a headache. I guess if you add any depth to the music or lyrics, it just becomes noise to me and noise is not pleasant!
Another fear I have is that because I haven't trained my brain to understand music, that I won't be able to understand music with implants. Music is very important to my husband and I feel like my distaste of it has lessened music on his priority list. That makes me sad. I very much want to train myself to appreciate music so that it can become important to him again.
I also fear the actual surgery. It's kind of a big deal. But again, the benefits are going to outweigh the risks so it's going to be worth the discomfort for a couple of weeks. I can do this!
Tuesday, December 13, 2011
Decision Made
Many people have asked if I am getting one implant or two (bilateral). My insurance, by miracle, approved two. However, they also say that our out pocket maximum ($2,000) does not apply to cochlear implants. Yesterday we found out what our copay would be. About $3,000 for one. About $23,000 for two. After much research, thought, discussion and prayer, my husband and I decided to get two. Basically the price for two is less than what we thought we would have to pay for one. And the benefits to having "surround sound" are huge. And we feel that financially, this is our best chance. And the surgical center will set up a payment plan with us so we do not have to pay it all up front. My sweet husband says he'll sell his truck if he has too, he wants me to have the benefit of both ears. There are some downsides. I will not have any residual hearing during the time between surgery and activation. Being totally deaf for 4-6 weeks without being able to use hearing aids or other assistive listening devices is not exactly appealing. This means we will be without my income for at least that long. And of course with double the surgery, it's double the recovery. But the decision was made last night. Bilateral it is.
This morning, the surgical center called and it appears we qualify for financial assistance, bringing the out of pocket expenses probably under $10,000. Dude. Talk about the miracles lining up this month. So, this reaffirmed our decision that bilaterals is the way to go.
Also this morning, the surgeon's office called me and asked me to come in as soon as I could this morning. Bundled up the kids, stopped Evan mid project and we all jumped in the van and drove to Salt Lake. Doc wanted to discuss all the test results and discuss our decision to get bilateral implants. He shared with us the risks that are involved with surgery. As we are doubling the surgery, we are doubling the risk. However, the risks are small. And he will first operate on my right ear, which is the worst ear, if any problems occur, he will not operate on the second. So I feel the risk is minimal compared to the positive outcomes.
Doc wanted me to get a CT scan. That was most definitely the easiest procedure/evaluation of all of them thus far!! Took maybe a minute and it was painless, no discomfort and I didn't have to hear. Whoo hoo! It was actually kind of cool to see my skull in pictures. Now I know I have one for sure. Hahaha. The Doc showed me where he would be drilling into the bones and where he would be threading the wires. Not exactly pleasant to picture my skull being drilled. It's a good thing others have done this before. Thousands and thousands of others. I do not feel like I am a guinea pig. I feel like this is a safe, reliable, amazing practice that many people have proven to do well with.
I received my hospital instructions. Is this really real???? I can't quite seem to grasp that a week from today, I will be bionic! My sweet little girl, after meeting the doctor that is going to "help mommy hear better" asked me "Can you hear me better yet?" Hahaha. I am so excited that one day soon I will be able to answer her question positively-- "Yes, my dear, I CAN hear you better and it's just going to get better and better."
This morning, the surgical center called and it appears we qualify for financial assistance, bringing the out of pocket expenses probably under $10,000. Dude. Talk about the miracles lining up this month. So, this reaffirmed our decision that bilaterals is the way to go.
Also this morning, the surgeon's office called me and asked me to come in as soon as I could this morning. Bundled up the kids, stopped Evan mid project and we all jumped in the van and drove to Salt Lake. Doc wanted to discuss all the test results and discuss our decision to get bilateral implants. He shared with us the risks that are involved with surgery. As we are doubling the surgery, we are doubling the risk. However, the risks are small. And he will first operate on my right ear, which is the worst ear, if any problems occur, he will not operate on the second. So I feel the risk is minimal compared to the positive outcomes.
Doc wanted me to get a CT scan. That was most definitely the easiest procedure/evaluation of all of them thus far!! Took maybe a minute and it was painless, no discomfort and I didn't have to hear. Whoo hoo! It was actually kind of cool to see my skull in pictures. Now I know I have one for sure. Hahaha. The Doc showed me where he would be drilling into the bones and where he would be threading the wires. Not exactly pleasant to picture my skull being drilled. It's a good thing others have done this before. Thousands and thousands of others. I do not feel like I am a guinea pig. I feel like this is a safe, reliable, amazing practice that many people have proven to do well with.
I received my hospital instructions. Is this really real???? I can't quite seem to grasp that a week from today, I will be bionic! My sweet little girl, after meeting the doctor that is going to "help mommy hear better" asked me "Can you hear me better yet?" Hahaha. I am so excited that one day soon I will be able to answer her question positively-- "Yes, my dear, I CAN hear you better and it's just going to get better and better."
Monday, December 12, 2011
Why Cochlear Americas?
Several posts ago, I mentioned I was leaning towards Advanced Bionics. That is no longer true. I feel the choice is very personal. I also feel no one, and I mean no one, should try to persuade you or force you to choose a particular brand. And once you have decided, you should be supported. That's my 2 cents. And I felt it was necessary to say because if anyone on their own implant journey ever finds this blog, I want them to feel rest assured that which ever manufacturer they choose, it WILL be a good one.
Moving on. I am choosing Cochler Americas. This is what the system looks like:
Moving on. I am choosing Cochler Americas. This is what the system looks like:
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Nucleus Freedom systemThe major components of the Nucleus Freedom system are: Cochlear implant (A) Coil (B) Sound processor (C) This is how it works: |
Thursday, December 8, 2011
Speechless
I do not have the words to express how I am feeling today. The outpouring of love and support I have receieved is just incredible. I am so fortunate to count some of the highest quality people on earth as my friends and family.
This blog was set up a couple of years ago with the intent to help me keep perspective on hearing loss. And I hoped that one day someone struggling with accepting their loss would find this blog and feel peace. Never did I dream that it would be a tool to be understood. I didn't realize it would be a way for me to connect with the closest people in my life. But that's what has happened this last week as I have opened myself up to share it.
Truly, thank you all for being a part of my journey. May each of you feel as supported and loved in your challenges as I have in mine :)
This blog was set up a couple of years ago with the intent to help me keep perspective on hearing loss. And I hoped that one day someone struggling with accepting their loss would find this blog and feel peace. Never did I dream that it would be a tool to be understood. I didn't realize it would be a way for me to connect with the closest people in my life. But that's what has happened this last week as I have opened myself up to share it.
Truly, thank you all for being a part of my journey. May each of you feel as supported and loved in your challenges as I have in mine :)
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