Today we took the pre-surgery "class" with Miss Kat. They forgot to get her an interpreter, so I had to sign everything, but other than that it went very well. They took her through the entire surgery step by step. They started in the waiting room and showed exactly what she can expect. They even let Miss Kat dress up in gloves and a mask and put an IV in her bunny! She was incredibly excited to find out that she can take her paci into the surgery room and that they have slushies when she wakes up.
We are also doing well. It was nice to see Miss Kat so excited and unafraid about the surgery. It really calms my fears to know that she is prepared. I don't want her waking up after surgery, confused and frighten. I want her to understand exactly what is happening to her. I feel like so much of the information glosses over the actual procedure and just says "You go to sleep and when you wake up, you have a CI!" I think Miss Kat needs to know that they will cut into her head and that when she wakes up there will be something inside her. Sooooo.....
When we got home, we took Miss Kat's "make-a-bear" bunny, and gave it an implant! We all "suited up" and had Nana open Bunny's head and put in a magnet. He is now upstairs in bed with Miss Kat with a big bandage wrapped around his head. He will also have a scar behind his ear forever just like all the other CI kids!
Kat Reading
Tuesday, September 30, 2008
Wednesday, September 24, 2008
UH-OH!
Miss Kat needs new earmolds. She has started getting little sores in her ears. We scheduled an appointment wil our old audiology center, so we wouldn't have to drive 4 hours just to get an impression made. We ended up seeing our old audiologist, the one who refused to even discuss the CI. It didn't go over so well.
We went in and she asked if both earmolds needed replaced. I told her "No. She will be getting an implant on her right side October 10th". She paused and looked up. I told her we had been seeing the other audiologist and that we just needed the earmold and didn't want to drive all the way up there to get it. She got very cold, and obviously mad. She asked "Have you already been approved for the CI?". I told her "Yes. We have the surgery already scheduled." She then asked something to the affect of "Are you sure?" I again repeated that Miss Kat would be receiving an implant in the next few weeks. She was visibly upset by the whole situation. It seemed very personal. I knew that she didn't support the idea of Miss Kat getting an implant, but at this point it is no longer her choice, or business.
The whole experience worried me. I know that she is on the implant committee, and I was worried that she was going to do something to put Miss Kat's surgery in jeopardy. As soon as I got home I called our audiologist. I told him what had happened and her reaction to the news. I told him that I was worried that she would try to interfere, and I asked him if she had that power. He reassured me. He told me that she isn't involved and that she couldn't do anything at this point. I am so relieved. I had no idea it was so personal for her. Why would this bother her? I knew that she didn't like that we sign, but come on!
We went in and she asked if both earmolds needed replaced. I told her "No. She will be getting an implant on her right side October 10th". She paused and looked up. I told her we had been seeing the other audiologist and that we just needed the earmold and didn't want to drive all the way up there to get it. She got very cold, and obviously mad. She asked "Have you already been approved for the CI?". I told her "Yes. We have the surgery already scheduled." She then asked something to the affect of "Are you sure?" I again repeated that Miss Kat would be receiving an implant in the next few weeks. She was visibly upset by the whole situation. It seemed very personal. I knew that she didn't support the idea of Miss Kat getting an implant, but at this point it is no longer her choice, or business.
The whole experience worried me. I know that she is on the implant committee, and I was worried that she was going to do something to put Miss Kat's surgery in jeopardy. As soon as I got home I called our audiologist. I told him what had happened and her reaction to the news. I told him that I was worried that she would try to interfere, and I asked him if she had that power. He reassured me. He told me that she isn't involved and that she couldn't do anything at this point. I am so relieved. I had no idea it was so personal for her. Why would this bother her? I knew that she didn't like that we sign, but come on!
More dates
So, we have our pre-op appointment set up for October 9. That is when we find out what time we need to arrive at the hospital, and go over all the details about recovery. Then or post-op appointment is one month later, November 11. That is the day we will get the all clear to activate. We are upset that it is sooooooo long, but we don't really have a choice. Activation is then scheduled for November 17 and 18. Our audiologist likes to do it over two days so he can get the best MAPS he can. That means an overnight in a hotel or a four hour round trip two days in a row...hotel it is! He said he will be sending us home with six maps, three on each of the processors.
I am excited and nervous. It seems like the surgery is so soon, but the activation is so far away!
I am excited and nervous. It seems like the surgery is so soon, but the activation is so far away!
Ordered the device
We drove up and saw our audiologist for the first time since we were approved for surgery. We ordered the CI. We decided to go with the Advanced Bionics for a number of reasons. We like the t-mic feature, we love that it is right in the ear, just like normal hearing. We love the HiRes Fidelity 120, we are very excited for Miss Kat to get that. We also like that each of the electrodes has an individual power source, and it has a wider window of sound capture. We like the battery indicator light, and the fact that we just have to flip a switch to change MAPs. We also like that it has the fastest stimulation rate for the auditory nerve. Oh, and did I mention, it was the cutest!!
The only con we are worried about with the AB is the failure rate. It is significantly higher than Cochlear, but we feel like it was a fluke (with supplier b) and that it has been resolved. We are very happy with our choice.
We have ordered this processor:
Our audiologist AND speech therapist both mentioned a strange pattern they have noticed, after we chose our device. They mentioned (separately)that they have noticed certain personality traits with the parents that chose AB. The audiologist said that he has seen a strong correlation between AB and Mac users! The therapist said that when she worked in Seattle, all her computer programmer parents ALWAYS choose AB. I have also noticed that the moms I get along with all seem to choose AB....interesting......
The only con we are worried about with the AB is the failure rate. It is significantly higher than Cochlear, but we feel like it was a fluke (with supplier b) and that it has been resolved. We are very happy with our choice.
We have ordered this processor:
Our audiologist AND speech therapist both mentioned a strange pattern they have noticed, after we chose our device. They mentioned (separately)that they have noticed certain personality traits with the parents that chose AB. The audiologist said that he has seen a strong correlation between AB and Mac users! The therapist said that when she worked in Seattle, all her computer programmer parents ALWAYS choose AB. I have also noticed that the moms I get along with all seem to choose AB....interesting......
Tuesday, September 16, 2008
WE GOT OUR SURGERY DATE!!!
It is October 10th. It is only 24 days away. It feels too soon. Was this too easy? Have we really thought this out enough? Done enough research? The burden of being the parent of Miss Kat is weighing heavily today. Sitting in the waiting room for the ENT made me physically ill. I am so afraid for her.
Monday, September 15, 2008
Appointment with the surgeon tomorrow
We have the big, long awaited appointment with the surgeon tomorrow. I am hoping this will be the only time we meet with him before surgery, so we created a list of questions for him to answer. Hopefully, he will assure me and we will quickly move on to getting Miss Kat her CI.
Questions for surgeon
How long have you been doing implants?
How many have you done?
How comfortable are you with the AB implant?
What are your failure rates?
How many explants have you had to do?
Infection rates?
Meningitis?
Do you feel like the nucleus contour provides a more delicate insertion, therefore sparing more residual hearing?
What are your feelings about technical alterations in the operative technique of cochlear implantation designed to preserve hearing including: (1) avoidance of acoustic trauma using low speed drills; (2) careful placement of the cochleostomy anterior and inferior to the round window membrane to avoid damage to the basilar membrane and ossea spiral lamina; (3) the use of steroids to protect against injury to the organ of Corti at the cellular level; (4) the use of shorter, thinner, atraumatic electrodes; and (5) a small cochleostomy to prevent buckling of the electrode and escape of perilymph?
Are you comfortable with the support staff at LDS Hospital i.e. their ability to work on young children?
Who at the hospital can I contact with my questions (interpreter, recovery room, etc.)?
Do you have any concerns about AB in general (failure rates, future, technology)?
In my research, I’ve noticed that more and more centers are activating early, some as soon as 24 hours after surgery. I was hoping since she is a good hearing aid user and much older than average, that she would be a candidate for early activation. Cache is on board if you are!
What does the recovery look like? How long will the “turban” stay on? How long for the steri-strips? How long until we can wash her hair? Go back to school?
What are the most common side effects? Chances of facial paralysis? Taste issues? Balance problems? Tinnitus?
What kind of pain medication will she get?
So, that's my list. Tomorrow I will get the answers we need. Then Wednesday, Miss Kat is getting her last meningitis vaccination, and then Thursday we see the audiologist to order the device. Things are moving quickly now, and I'm excited....today is a good day.
Questions for surgeon
How long have you been doing implants?
How many have you done?
How comfortable are you with the AB implant?
What are your failure rates?
How many explants have you had to do?
Infection rates?
Meningitis?
Do you feel like the nucleus contour provides a more delicate insertion, therefore sparing more residual hearing?
What are your feelings about technical alterations in the operative technique of cochlear implantation designed to preserve hearing including: (1) avoidance of acoustic trauma using low speed drills; (2) careful placement of the cochleostomy anterior and inferior to the round window membrane to avoid damage to the basilar membrane and ossea spiral lamina; (3) the use of steroids to protect against injury to the organ of Corti at the cellular level; (4) the use of shorter, thinner, atraumatic electrodes; and (5) a small cochleostomy to prevent buckling of the electrode and escape of perilymph?
Are you comfortable with the support staff at LDS Hospital i.e. their ability to work on young children?
Who at the hospital can I contact with my questions (interpreter, recovery room, etc.)?
Do you have any concerns about AB in general (failure rates, future, technology)?
In my research, I’ve noticed that more and more centers are activating early, some as soon as 24 hours after surgery. I was hoping since she is a good hearing aid user and much older than average, that she would be a candidate for early activation. Cache is on board if you are!
What does the recovery look like? How long will the “turban” stay on? How long for the steri-strips? How long until we can wash her hair? Go back to school?
What are the most common side effects? Chances of facial paralysis? Taste issues? Balance problems? Tinnitus?
What kind of pain medication will she get?
So, that's my list. Tomorrow I will get the answers we need. Then Wednesday, Miss Kat is getting her last meningitis vaccination, and then Thursday we see the audiologist to order the device. Things are moving quickly now, and I'm excited....today is a good day.
Saturday, September 6, 2008
Therapy continues
Miss Kat had another great session with her therapist yesterday. She has been improving by leaps and bounds. The whole team is so excited by her progress. Our therapist said that if we had asked for a CI a year ago, she would have thought it was a bad idea. But now she thinks that Miss Kat is a great candidate. She said she believes that once Katrina gets the implant, her spoken language will explode.
I'm going to try to explain what Miss Kat was doing in speech, but it is a little complicated so I hope it makes sense. Katrina doesn't understand a whole lot of speech yet, she has a few dozen words that she can process. But, that is understandable with her hearing loss. Right now we are working on just hearing different rhythms. Miss Kat was able to tell the difference between "ouch!", "Sit down", and "Do you want to play?". Again, she didn't understand the meaning (except for ouch, because she uses that word already) but she was able to tell which was spoken 100% of the time! That means that she can hear the difference in syllables and can remember which picture corresponds to which phrase.
I don't know if any of this sounds like a big deal to anyone else, but for us, it is huge. Miss Kat is finally making progress. She had been stuck at the same level for 2+ years. She didn't understand and she couldn't do it. We have really had a break through, and it couldn't have come at a better time. I feel like this is just another sign that the implant is the right thing, and that now is the right time.
I'm going to try to explain what Miss Kat was doing in speech, but it is a little complicated so I hope it makes sense. Katrina doesn't understand a whole lot of speech yet, she has a few dozen words that she can process. But, that is understandable with her hearing loss. Right now we are working on just hearing different rhythms. Miss Kat was able to tell the difference between "ouch!", "Sit down", and "Do you want to play?". Again, she didn't understand the meaning (except for ouch, because she uses that word already) but she was able to tell which was spoken 100% of the time! That means that she can hear the difference in syllables and can remember which picture corresponds to which phrase.
I don't know if any of this sounds like a big deal to anyone else, but for us, it is huge. Miss Kat is finally making progress. She had been stuck at the same level for 2+ years. She didn't understand and she couldn't do it. We have really had a break through, and it couldn't have come at a better time. I feel like this is just another sign that the implant is the right thing, and that now is the right time.
Friday, September 5, 2008
MRI day
So here I am, 3:30 in the afternoon, sitting in a freezing hospital recovery room with a pencil in hand and one of those stupid itchy blankets draped over my lap. I'm waiting while my precious baby is having a MRI. She is so brave.
Miss Kat was so brave when I told her that they had to put in an IV. She cried but as soon as it was over, she was fine again. She didn't even complain about not being able to eat all day. she really is amazing. Her little body has been through so much in her life. But still, she is incredibly healthy and strong. Not to mention her special spirit! Miss Kat is brave, sweet, smart and so funny. I would say that I am proud of her, but that would imply that I had something to do with it!
Sometimes I think that we should just leave her alone, that I can't believe I am putting her through this, and now is one of those times. But on the other hand, rewind 90 minutes ago, I took Miss Kat up to the audiology department and showed her the Advanced Bionics earpieces and implants. I was sure then. I knew this was right. But now, as they took her limp body from my arms, now it's so scary. I'm here, alone and cold, and so frightened for her. I can't hear her babbling, reminding me that she wants to speak. I can't see her shaking a toy next to her ear signing"listen!" to remind me that she wants to hear, that she misses sounds, and wants them back. I need to remember and I need to be strong...for her.
Now she's back with me again. all wrapped up and asleep. The radiology tech just told me everything looks perfect, she is clear for the implant. I also just realised that the next time I see her sedated, in a hospital bed, she will have the implant inside her. I'm so scared, and now, nauseous. This is a big deal, can I do this to (for) her? I'm terrified, but sure. This is right. I will be strong- for my girl.
Miss Kat was so brave when I told her that they had to put in an IV. She cried but as soon as it was over, she was fine again. She didn't even complain about not being able to eat all day. she really is amazing. Her little body has been through so much in her life. But still, she is incredibly healthy and strong. Not to mention her special spirit! Miss Kat is brave, sweet, smart and so funny. I would say that I am proud of her, but that would imply that I had something to do with it!
Sometimes I think that we should just leave her alone, that I can't believe I am putting her through this, and now is one of those times. But on the other hand, rewind 90 minutes ago, I took Miss Kat up to the audiology department and showed her the Advanced Bionics earpieces and implants. I was sure then. I knew this was right. But now, as they took her limp body from my arms, now it's so scary. I'm here, alone and cold, and so frightened for her. I can't hear her babbling, reminding me that she wants to speak. I can't see her shaking a toy next to her ear signing"listen!" to remind me that she wants to hear, that she misses sounds, and wants them back. I need to remember and I need to be strong...for her.
Now she's back with me again. all wrapped up and asleep. The radiology tech just told me everything looks perfect, she is clear for the implant. I also just realised that the next time I see her sedated, in a hospital bed, she will have the implant inside her. I'm so scared, and now, nauseous. This is a big deal, can I do this to (for) her? I'm terrified, but sure. This is right. I will be strong- for my girl.
So, I started thinking
I realized that once our MRI is done, we will be waiting for 6 weeks to see the surgeon. I spoke to our audiologist and he thought that was too long. He suggested I call back and ask if they have any openings with the other surgeon. (Turns out our ENT is very territorial and has just recently begun "letting" the other ENTs work on kids) So, I called the office again. I explained that we were scheduled to get our MRI in two days, so could we get an earlier appointment if we used surgeon #2. The secretary looked and was able to get us in with surgeon #1 in two weeks!!!! I was dumbfounded. September 16, a full month earlier! I also called the audiologist back and made an appointment to order the device, September 18. Suddenly the ball is rolling very fast.
We could be looking at a surgery date in October instead of December now! I got so nervous I started calling all the parents of CI kids I know. I had to go out for a walk, just to get rid of my nervous energy. I am thrilled that this is really going to happen now, but it is also scary that it is happening so soon. I am still in shock, I think. I had never believed Miss Kat would be an implant candidate, and then when her loss got more severe, I thought that people would say no. I really think, at the beginning of this journey, I had never considered that it would actually happen. That she would ever really get a CI. Guess I was wrong!
We could be looking at a surgery date in October instead of December now! I got so nervous I started calling all the parents of CI kids I know. I had to go out for a walk, just to get rid of my nervous energy. I am thrilled that this is really going to happen now, but it is also scary that it is happening so soon. I am still in shock, I think. I had never believed Miss Kat would be an implant candidate, and then when her loss got more severe, I thought that people would say no. I really think, at the beginning of this journey, I had never considered that it would actually happen. That she would ever really get a CI. Guess I was wrong!
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