Our summer plans begin this Wednesday! We will be headed up to Sound Beginnings for their summer camp. http://www.soundbeginnings.usu.edu/docs/SoundBeginnings4-20-2010.pdf It will be Wednesday, Thursday, and Friday. Miss Kat will be doing kids activities and I will have parent classes. We are camping out those nights (because we couldn't afford a hotel room!) and Miss Kat is so excited (I am less than thrilled, but I will survive)!
Then we will be home for another week, one that is packed with appointments and fun. Then on Friday we will be headed out to CID for our summer school! We will be staying at CID until July 23rd.
The following Monday is Miss Kat's pre-surgery ENT appointment and then Tuesday the 27th is her bilateral surgery!!
WOW! That is a lot to get done and it is all starting the day after tomorrow!
Kat Reading
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Monday, June 7, 2010
Thursday, November 20, 2008
Post-op
Today was the post-op appointment with Miss Kat's surgeon. Hubby and I were terrified!
The surgeon is very conservative and does NOT activate before 4 weeks. We had a scheduling conflict because we are going to have to be in court the first two weeks of December, starting on the 2nd. They had originally scheduled post op for Dec. 3rd and activation for the next day. When I spoke to the scheduler and explained that we needed to move it up just a few days, she said "No way.", because Thanksgiving was the week before and that would bump us all the way back to Wednesday, and therefore it would be just barely over 3 weeks after surgery. We asked what we could do, and she said we could ask at the pre-op appointment, but that the surgeon always says the longer the better. He says "6 weeks is better than 3". Ugh!
At the pre-op appointment I explained to him that hubby and I will be in court the first two weeks of December and that we wanted to get Miss Kat activated before Dec. 2 so that we did not have to wait until after Christmas. He was feeling guilty about cancelling our surgery date, so he said "No problem. Just make an appointment at the desk". Then he wrote on the little paper for the receptionist "3-4 weeks later". When the secretary saw the paper she was surprised, she said "What did you say? He NEVER does it in less then 4 weeks!" So, the receptionist is searching for a post-op appointment and asks if Dec. 3rd is OK, I say no we need before Thanksgiving. So, she gives us today's appointment. It is only 16 days after surgery!!!
SO, we showed up today on pins and needles. Miss Kat is healing amazingly well, so we felt like she was ready for activation. We hoped that if the surgeon looked at her, instead of the date, that he would give us the go ahead. After over an hour of waiting, the doctor came into to look at Miss Kat. He asked how everything went, and we told him that she was jumping on the bed the next day (but we were trying to stop her!) and that she was off the medicine by the next morning too (she hated the taste!). He starts looking at the healing incision and kinda mumbles "Hmmm" and then he says he needs a light. Hubby and I start to really freak out! He seems to be worried about something, and is looking really close. He turns back and says "She has a little scab at the top. Feel free to wash it and try to get that off." And then "She looks great. Take this paper and set up activation with the audiologist"!
Little did he know that we set up activation a month ago, and it is tomorrow morning! We have to leave at 7 am and drive two hours, but our audiologist is the best. He called today and told me that he has the battery charging! He told me that he has two processors for us, and will set us up with 6 MAPs. Also, we have another MAPing on Monday. We are so ready. The gas tank is full and the camera is charging!
Tomorrow our bionic girl goes on-line.
The surgeon is very conservative and does NOT activate before 4 weeks. We had a scheduling conflict because we are going to have to be in court the first two weeks of December, starting on the 2nd. They had originally scheduled post op for Dec. 3rd and activation for the next day. When I spoke to the scheduler and explained that we needed to move it up just a few days, she said "No way.", because Thanksgiving was the week before and that would bump us all the way back to Wednesday, and therefore it would be just barely over 3 weeks after surgery. We asked what we could do, and she said we could ask at the pre-op appointment, but that the surgeon always says the longer the better. He says "6 weeks is better than 3". Ugh!
At the pre-op appointment I explained to him that hubby and I will be in court the first two weeks of December and that we wanted to get Miss Kat activated before Dec. 2 so that we did not have to wait until after Christmas. He was feeling guilty about cancelling our surgery date, so he said "No problem. Just make an appointment at the desk". Then he wrote on the little paper for the receptionist "3-4 weeks later". When the secretary saw the paper she was surprised, she said "What did you say? He NEVER does it in less then 4 weeks!" So, the receptionist is searching for a post-op appointment and asks if Dec. 3rd is OK, I say no we need before Thanksgiving. So, she gives us today's appointment. It is only 16 days after surgery!!!
SO, we showed up today on pins and needles. Miss Kat is healing amazingly well, so we felt like she was ready for activation. We hoped that if the surgeon looked at her, instead of the date, that he would give us the go ahead. After over an hour of waiting, the doctor came into to look at Miss Kat. He asked how everything went, and we told him that she was jumping on the bed the next day (but we were trying to stop her!) and that she was off the medicine by the next morning too (she hated the taste!). He starts looking at the healing incision and kinda mumbles "Hmmm" and then he says he needs a light. Hubby and I start to really freak out! He seems to be worried about something, and is looking really close. He turns back and says "She has a little scab at the top. Feel free to wash it and try to get that off." And then "She looks great. Take this paper and set up activation with the audiologist"!
Little did he know that we set up activation a month ago, and it is tomorrow morning! We have to leave at 7 am and drive two hours, but our audiologist is the best. He called today and told me that he has the battery charging! He told me that he has two processors for us, and will set us up with 6 MAPs. Also, we have another MAPing on Monday. We are so ready. The gas tank is full and the camera is charging!
Tomorrow our bionic girl goes on-line.
Monday, November 10, 2008
OH THE HUMANITY!
Today was day seven after surgery so it was time to remove the steri-strips and give Miss Kat a bath. We wanted to get that old crusty blood off and wash her hair. They were starting to peel off so we wet them and tried to ease them off. It didn't work. We decided to just pull the tape off like a band-aid.....BIG mistake! It hurt Miss Kat a little and it started to bleed! I started to get faint and I really freaked out. I called the ENT and he obviously thought I was an idiot. He said if it was gushing blood or kept bleeding for an hour we should come in. I said "An hour?!?!" He also scolded us and said we should have left the tape until it peeled itself off. Oops! The paper said to leave it on for seven days. I feel awful for Miss Kat, and now I'm terribly worried that something bad is going to happen to the incision (I'm paranoid because my c-section incision reopened after Miss Kat was delivered. It was one of the most horrible experiences in my life. I still get shaky when I think about it too much.)
I also got my first good look at the actual incision. I was still freaked out by the earlier incident and I got really freaked out. It looks like the surgeon cut her ear off! I guess, logically, I know he didn't, but it was still so icky. I'm trying hard to regain my composure, but it has been hard.
I also got my first good look at the actual incision. I was still freaked out by the earlier incident and I got really freaked out. It looks like the surgeon cut her ear off! I guess, logically, I know he didn't, but it was still so icky. I'm trying hard to regain my composure, but it has been hard.
Tuesday, November 4, 2008
The next day
Miss Kat is doing well. Daddy took off her bandage. He said I should be happy that I wasn't there for it, he got a little sick!
The incision looks great (to me). There is no swelling, no redness, no bleeding, no oozing. It is a little bigger than average, and the surgeon shaved more hair than was really necessary. I think it looks great. I also can't even see where the implant itself is! He must have set it into the skull really well.
Miss Kat is up and playing. She is still taking her pain meds regularly, but she is happy!
The incision looks great (to me). There is no swelling, no redness, no bleeding, no oozing. It is a little bigger than average, and the surgeon shaved more hair than was really necessary. I think it looks great. I also can't even see where the implant itself is! He must have set it into the skull really well.
Miss Kat is up and playing. She is still taking her pain meds regularly, but she is happy!
Monday, November 3, 2008
At home
As soon as we were in the car we gave Miss Kat her first dose of pain meds. She really hates the bandage on her head. I think she has shooting pains occasionally, because she will suddenly cry out and grab her ear. I also think that she believes the bandage is causing the pain...poor baby.
When we got home Miss Kat ate two goldfish crackers and we all laid down to take a nap. She slept for about two hours. When she woke up she was almost totally back to regular self. She is still a little subdued, but she is so much cheerer. She ate a cheese quesadilla for dinner and then watched a little Curious George. She fell asleep in our bed about 730. Daddy is asleep on the couch right now as I type this too.
Tomorrow the bandage comes off and I have to face the incision. I also have to go to work, but Daddy will be here with her. We have decided to keep her home all week, so each family member is taking a day off. I have Thursday.
Oh, and the saddest thing happened, as a ploy to get us to take her bandage off, Miss Kat said that if she went to school with it on tomorrow, all the kids would make fun of her. Ahhh, poor baby! It isn't true, the kids are sweethearts and would never be mean like that, AND she isn't going to school for awhile, but isn't that a sad little thought for her to have? It broke my heart!
When we got home Miss Kat ate two goldfish crackers and we all laid down to take a nap. She slept for about two hours. When she woke up she was almost totally back to regular self. She is still a little subdued, but she is so much cheerer. She ate a cheese quesadilla for dinner and then watched a little Curious George. She fell asleep in our bed about 730. Daddy is asleep on the couch right now as I type this too.
Tomorrow the bandage comes off and I have to face the incision. I also have to go to work, but Daddy will be here with her. We have decided to keep her home all week, so each family member is taking a day off. I have Thursday.
Oh, and the saddest thing happened, as a ploy to get us to take her bandage off, Miss Kat said that if she went to school with it on tomorrow, all the kids would make fun of her. Ahhh, poor baby! It isn't true, the kids are sweethearts and would never be mean like that, AND she isn't going to school for awhile, but isn't that a sad little thought for her to have? It broke my heart!
Surgery
We woke up bright and early this morning, we had to be at the hospital at 530 am. Miss Kat was very tired and pretty cranky. She really didn't want to put on the hospital gown, she thought we were trying to put it on her backwards! She was fairly cooperative otherwise.
At about 7, they brought her Versed. I can not sing the praises of that liquid enough! She started giggling and was so silly. She started playing with her own lips and laughing about nothing! The anesthesiologist came in and explained everything that would happen. She got all ready and brought Bunny with her into surgery.
After about an hour I received a call in the waiting room updating us. The whole staff was so impressed by how prepared Miss Kat was for surgery. They said that the moment she got back into the operating room she hopped off the bed and onto the table. Next, the doctor showed her the pulse ox and she held out her finger for him. Then she looked around and found the mask and laiddown, put it over her mouth and started to breath deeply. What a smarty!
As soon as she was out of surgery, and her tube was pulled, they came and got me. They said that they never let parents pack in the PACU, but that since she signs they need me to help with questions. Wow, I'm glad! I didn't want her to have to wake up alone. When I got back there she looked better than I expected. She wasn't swollen or bruised, two things I had been warned about. She was itchy though, her pain meds make her eyes and nose itch. She has been rubbing her eye all day. She was coming in and out of consciousness the whole time we were back there. They asked her if she was hurting and she said no, but that she wanted another pillow. As soon as she realized I was there she started to ask for me to hold her, it was so sweet and sad at the same time. She wanted to crawl into my arms, but she couldn't. She settled for me hugging her and her wrapping her little arms around me.
When she started to really wake up it was time to move to the recovery room. I told her we were headed to a different room and she started to gather all her stuff to get up and leave! I told her to stay on the bed, that they would take her...silly girl! As we were going down the hall we stopped off at the waiting room to pick up Daddy and Grammy. When Miss Kat saw me go in to the other room she started to get up to come too (what are we going to do with her??).
On the way to the recovery room Miss Kat asked for her Popsicle and a soda (she remembered from the tour!) She drank and ate, and then napped a little. She really didn't like the IV and the cords and bandages. She was feeling ok so we got out of there as quick as we could. She ended up throwing up just a little, and we figure that was because of dizziness from getting up and changing clothes.
Miss Kat is now a bionic girl.
At about 7, they brought her Versed. I can not sing the praises of that liquid enough! She started giggling and was so silly. She started playing with her own lips and laughing about nothing! The anesthesiologist came in and explained everything that would happen. She got all ready and brought Bunny with her into surgery.
After about an hour I received a call in the waiting room updating us. The whole staff was so impressed by how prepared Miss Kat was for surgery. They said that the moment she got back into the operating room she hopped off the bed and onto the table. Next, the doctor showed her the pulse ox and she held out her finger for him. Then she looked around and found the mask and laiddown, put it over her mouth and started to breath deeply. What a smarty!
As soon as she was out of surgery, and her tube was pulled, they came and got me. They said that they never let parents pack in the PACU, but that since she signs they need me to help with questions. Wow, I'm glad! I didn't want her to have to wake up alone. When I got back there she looked better than I expected. She wasn't swollen or bruised, two things I had been warned about. She was itchy though, her pain meds make her eyes and nose itch. She has been rubbing her eye all day. She was coming in and out of consciousness the whole time we were back there. They asked her if she was hurting and she said no, but that she wanted another pillow. As soon as she realized I was there she started to ask for me to hold her, it was so sweet and sad at the same time. She wanted to crawl into my arms, but she couldn't. She settled for me hugging her and her wrapping her little arms around me.
When she started to really wake up it was time to move to the recovery room. I told her we were headed to a different room and she started to gather all her stuff to get up and leave! I told her to stay on the bed, that they would take her...silly girl! As we were going down the hall we stopped off at the waiting room to pick up Daddy and Grammy. When Miss Kat saw me go in to the other room she started to get up to come too (what are we going to do with her??).
On the way to the recovery room Miss Kat asked for her Popsicle and a soda (she remembered from the tour!) She drank and ate, and then napped a little. She really didn't like the IV and the cords and bandages. She was feeling ok so we got out of there as quick as we could. She ended up throwing up just a little, and we figure that was because of dizziness from getting up and changing clothes.
Miss Kat is now a bionic girl.
Sunday, November 2, 2008
Tomorrow
Surgery is tomorrow. We have to be at the hospital at 5:30 a.m. That is crazy early but at least Miss Kat won't be jumping off the walls while we are waiting. We are packing tonight, braiding her hair tight (so the surgeon will hopefully shave less), and then we will be ready.
The fear hasn't really hit me yet.
The fear hasn't really hit me yet.
Friday, October 31, 2008
Pre-op
We had Miss Kat's pre-op appointment yesterday. It took forever! We got our prescriptions and an envelope that they said was her "ticket into surgery". The hospital will call today to tell us what time to be there on Monday.
We also got our post-op appointment moved a little bit earlier than expected. The surgeon generally is very strict about waiting a full 4 weeks. I explained our situation and said we needed to have her activated by Dec. 1. He said "No problem"! I was shocked! Our post op is set for Nov. 20 and activation will be Nov. 21 and 24. We are still terrified though. We are so worried that he will look at her appointment and say "No way. This is way too early". It is only 17 days post surgery, and he likes at least 30. We are worried our whole activation will get cancelled again at the last minute. Ugh, like we need another thing to worry about right now.
Tonight is Trick or Treating, then we have Miss Kat's best friend's birthday, and then we pack up to go to the hospital!
We also got our post-op appointment moved a little bit earlier than expected. The surgeon generally is very strict about waiting a full 4 weeks. I explained our situation and said we needed to have her activated by Dec. 1. He said "No problem"! I was shocked! Our post op is set for Nov. 20 and activation will be Nov. 21 and 24. We are still terrified though. We are so worried that he will look at her appointment and say "No way. This is way too early". It is only 17 days post surgery, and he likes at least 30. We are worried our whole activation will get cancelled again at the last minute. Ugh, like we need another thing to worry about right now.
Tonight is Trick or Treating, then we have Miss Kat's best friend's birthday, and then we pack up to go to the hospital!
Tuesday, October 28, 2008
The meeting
This morning was the cochlear implant committee meeting. I sat in to make sure than the information being presented was unbiased and accurate.
Miss Kat's audiologist spoke for a minute about her hearing history and audiology. Then they read a statement from our speech therapist (she was unable to attend because of a family issue). It expressed the fact that Miss Kat was motivated and able to progress in her auditory skills and that she fully supports Miss Kat getting an implant. She stated that Miss Kat is "an excellent candidate".
The classroom placement came up very briefly and I read a statement from Miss Kat's teacher. It laid out the services she received at school and the fact that they are fully prepared to support Miss Kat's success in anyway they can. Our audiologist also mentioned that she is in the only placement that is available for her! Another committee member (I have no idea who) said that she can either be at her school and educated, or in a corner alone in an oral class! I also told them that if Miss Kat shows improvement and becomes an oral language user, we are more than willing to look into a change of placement.
After that the surgeon just looked around and asked if they were all in agreement. Everyone nodded and one guy said "I give her two thumbs up for the implant"! So....it is set! Surgery is Monday!!!
We are headed out right now to tour the new hospital. (We had to change hospitals because we didn't want to wait until December) I'm so excited. This is going to move very fast now. Her pre-op is Thursday! Then Halloween, then surgery!
Miss Kat's audiologist spoke for a minute about her hearing history and audiology. Then they read a statement from our speech therapist (she was unable to attend because of a family issue). It expressed the fact that Miss Kat was motivated and able to progress in her auditory skills and that she fully supports Miss Kat getting an implant. She stated that Miss Kat is "an excellent candidate".
The classroom placement came up very briefly and I read a statement from Miss Kat's teacher. It laid out the services she received at school and the fact that they are fully prepared to support Miss Kat's success in anyway they can. Our audiologist also mentioned that she is in the only placement that is available for her! Another committee member (I have no idea who) said that she can either be at her school and educated, or in a corner alone in an oral class! I also told them that if Miss Kat shows improvement and becomes an oral language user, we are more than willing to look into a change of placement.
After that the surgeon just looked around and asked if they were all in agreement. Everyone nodded and one guy said "I give her two thumbs up for the implant"! So....it is set! Surgery is Monday!!!
We are headed out right now to tour the new hospital. (We had to change hospitals because we didn't want to wait until December) I'm so excited. This is going to move very fast now. Her pre-op is Thursday! Then Halloween, then surgery!
Tuesday, October 14, 2008
The phone call
Monday, October 6th at around 3:30 in the afternoon I received a phone call from the ENT. They were calling to cancel Miss Kat's surgery. The surgeon was concerned because their was a disagreement between audiologists. He said that since our former audiologist was a member of the CI Center's implant committee she needed to be on board with the surgery.
As soon as we found this out we drove to see the audiologist. We told her that our surgery had been cancelled because of her objections. We went back to her little room and told her what was going on. We told her that many things had changed since she had last seen Miss Kat. She just kept repeating that she had no new information and that what she knew of Miss Kat made her a bad implant candidate. We asked specifically what her concerns were. She mentioned that she thought that her speech skills were underdeveloped, that she thought her school placement was inappropriate, and that she thought that Miss Kat wouldn't be getting therapy. When we tried to explain the truth, she just cut us off and kept saying that she wasn't informed of that.
My husband and I became very frustrated, We were trying to explain the situation and the changes, but she just didn't care. She repeated over and over that she didn't know what was going on and that they would have a meeting, and that we should just wait and see what happens in the meeting. She kept saying "I'm just one vote, so even if I say no..." I asked why she was against it and she said that she thought they "needed to be implanting responsibly". I told her that there were tons of centers that implanted pre-lingually deaf signers and she indicated that she thought they shouldn't be.
Eventually the conversation deteriorated and I left in a huff. I was so hurt and outraged that this woman wanted to deny my child the gift of hearing. She just kept saying "It can wait", she even went so far as to say "You waited 5 years, a few more weeks won't matter". That is when I lost it. I told her that was blatantly untrue. I told her that the moment that Miss Kat's hearing loss became severe that I was in that office asking for information about an implant. I said "Don't you dare imply that we don't want this. I was here the second she was eligible." I told her that Miss Kat's loss was progressive and that she has NOT been deaf since birth and that she has only been unable to effectively use aids for a few months. She is not a classic, pre-lingually severe-profoundly deaf child at this age. She has experienced hearing, and listening.
Nothing changed in the meeting, but I am still happy I told her what I thought. I made it clear that I knew she was doing it because Miss Kat signs. I am attending the CI committee meeting, it is October 28th. I want to hear what these people will be saying about my child. I think that my attendance will help make sure it is unbiased.
As soon as we found this out we drove to see the audiologist. We told her that our surgery had been cancelled because of her objections. We went back to her little room and told her what was going on. We told her that many things had changed since she had last seen Miss Kat. She just kept repeating that she had no new information and that what she knew of Miss Kat made her a bad implant candidate. We asked specifically what her concerns were. She mentioned that she thought that her speech skills were underdeveloped, that she thought her school placement was inappropriate, and that she thought that Miss Kat wouldn't be getting therapy. When we tried to explain the truth, she just cut us off and kept saying that she wasn't informed of that.
My husband and I became very frustrated, We were trying to explain the situation and the changes, but she just didn't care. She repeated over and over that she didn't know what was going on and that they would have a meeting, and that we should just wait and see what happens in the meeting. She kept saying "I'm just one vote, so even if I say no..." I asked why she was against it and she said that she thought they "needed to be implanting responsibly". I told her that there were tons of centers that implanted pre-lingually deaf signers and she indicated that she thought they shouldn't be.
Eventually the conversation deteriorated and I left in a huff. I was so hurt and outraged that this woman wanted to deny my child the gift of hearing. She just kept saying "It can wait", she even went so far as to say "You waited 5 years, a few more weeks won't matter". That is when I lost it. I told her that was blatantly untrue. I told her that the moment that Miss Kat's hearing loss became severe that I was in that office asking for information about an implant. I said "Don't you dare imply that we don't want this. I was here the second she was eligible." I told her that Miss Kat's loss was progressive and that she has NOT been deaf since birth and that she has only been unable to effectively use aids for a few months. She is not a classic, pre-lingually severe-profoundly deaf child at this age. She has experienced hearing, and listening.
Nothing changed in the meeting, but I am still happy I told her what I thought. I made it clear that I knew she was doing it because Miss Kat signs. I am attending the CI committee meeting, it is October 28th. I want to hear what these people will be saying about my child. I think that my attendance will help make sure it is unbiased.
Thursday, October 2, 2008
Update
Bunny is up and playing now. She really bounced right back from surgery. The little ones handle it so much better than we grown ups....
Oh, and now that Miss Kat has her surgeons license everyone is our house is getting CI's. The latest patient was her pig. I think the pig must be post-lingually deafen because he oinks like a hearing pig.
Oh, and now that Miss Kat has her surgeons license everyone is our house is getting CI's. The latest patient was her pig. I think the pig must be post-lingually deafen because he oinks like a hearing pig.
Tuesday, September 30, 2008
Preparations for surgery
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!
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!
Wednesday, September 24, 2008
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.
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!
Saturday, August 30, 2008
We spoke to the surgeon's office!
Finally spoke to someone at the surgeons office. We have our appointment... Oct. 16. We need to get an MRI before then, and then we will be headed for surgery! I asked the secretary how long it takes after the appointment to actually get the surgery. She said that, of course, it varies but that it is normally 4 to 6 weeks after insurance approval. I told her we have medicaid and asked her how long that usually takes or if it will be a problem. She told me medicaid should approve quickly (so long as she is an implant candidate). I told her that she should be. She then said that they are starting to schedule at Primary Children's Hospital for Dec. 5. I was dumbfounded. We actually had a far off goal. I had mentioned earlier that Miss Kat is five years old now, so she thought to herself for a moment and remarked that Katrina could even be seen at LDS hospital since she was so old. She said that they have more OR time at LDS so it could be much earlier!
I can't believe we are doing this. Could this actually be happening? I've been thinking about how poor her hearing now is with her aids. We start speech therapy this week and I worry about how much good it will even do. She was making such great progress last year, I am concerned that it won't happen again. What if her hearing was so poor now that her speech and listening skills couldn't improved? It seemed possible. Her speech was very quickly deteriorating. Her "daddy" was now "baa". Even "No" was intelligible. She needs the implant to bring her back to where she was, let alone make it possible for her to improve. I am more sure than ever that this is the right choice for her.
I called and set up Miss Kat's appointment for her MRI. She hoes in Sept. 4 at 2:45. It is way before her ENT appointment, so I'm going to start calling every morning to see if they had a cancellation, so maybe we can move the whole thing up. I'm starting to feel the urgency. She needs this now. I don't want her to have to wait one extra day. The idea of 4 weeks between surgery and activation is killing me....
I can't believe we are doing this. Could this actually be happening? I've been thinking about how poor her hearing now is with her aids. We start speech therapy this week and I worry about how much good it will even do. She was making such great progress last year, I am concerned that it won't happen again. What if her hearing was so poor now that her speech and listening skills couldn't improved? It seemed possible. Her speech was very quickly deteriorating. Her "daddy" was now "baa". Even "No" was intelligible. She needs the implant to bring her back to where she was, let alone make it possible for her to improve. I am more sure than ever that this is the right choice for her.
I called and set up Miss Kat's appointment for her MRI. She hoes in Sept. 4 at 2:45. It is way before her ENT appointment, so I'm going to start calling every morning to see if they had a cancellation, so maybe we can move the whole thing up. I'm starting to feel the urgency. She needs this now. I don't want her to have to wait one extra day. The idea of 4 weeks between surgery and activation is killing me....
Subscribe to:
Posts (Atom)