When I last blogged, I was very honest about Miss Kat's reaction to her second implant activation. I was really surprised at the reaction....actually, a better word would be disappointed. I am not really surprised by the online Deaf community anymore. I have had VERY nasty comments, accusations of child abuse, blah blah blah, and because I "showed weakness" it happened again. I wanted to be honest about my daughter's experiences with her cochlear implants, and just her life as a Deaf child, but some people see my honesty as an opportunity to attack and smear cochlear implants....C'est la vie as a hearing parent of an implanted child I suppose.
So, I wanted to update everyone who cares about Miss Kat. She is doing great now! She doesn't mind her second implant anymore. She hasn't struggled putting it on for at least a week now and she doesn't say it is loud at all. She is starting to be able to discriminate simple words with it and no longer hears the "beeping".
It was a struggle in the beginning, but honestly, it was a HUGE life event for her. She can now hear in her other ear! She had surgery and activation and now has hearing in an ear that didn't before! It's kind of a big deal! I think sometimes we forget what an impact that would have in a person's life, we (as parents) are so excited about activation and hearing that we forget what a change it is for the child, and we need to remember to be extra patient and gentle through the transition.
Miss Kat is tired a lot, listening with her new ear is a lot of work! I am glad it is still early in the school year, so there isn't a ton of work and we can focus on catching her ear up and therapy, and not fall behind in homework and stuff. She is doing great!
So, I want to say to other parents, keep going, it get better, it's worth it! You chose a CI for your child for reasons, you want them to have the opportunity to hear. There will be struggles, there will be bad days, but the good days will outweigh them. I would like to say to the doubters...I told you so :) She is happy, healthy and likes her CI and it took all of a week.
Kat Reading
Showing posts with label bilateral. Show all posts
Showing posts with label bilateral. Show all posts
Sunday, September 5, 2010
Sunday, August 22, 2010
Post-op #2
Miss Kat had her post op yesterday. It is the last step before activation!! The surgeon just wants to take a look at the incision, make sure everything is healing well before he gives the OK for activation.
(I was not at the appointment, so the entirety of this post is from the report of Hubby)
The first person that came to see Miss Kat was the surgeon's medical assistant. She asked how Miss Kat's recovery went and took a look at the healed incision. She noticed that there was a little stitch still there. It had been covered by a little scab, so it never healed. The assistant wanted to just remove the stitch (should just take a sec), so we told Miss Kat and all hell broke lose! She was pretty sure that she would die from the removal...slowly and painfully! (I didn't write about it, but we had a HUGE struggle getting the steri-strips off as well. They were supposed to come off themselves after a week, and that just didn't happen, so eventually (after more than two weeks) we had to take them off, and Miss Kat FREAKED out!)
So, Miss Kat tries to be brave and let her remove the stitch, but she was genuinely scared, so no progress is made. Miss Kat tries to sit and let her do it, but every time the assistant even comes close to touching her, she pulls away and cries. Then Daddy sits and tries to hold her head to let them get the stitch out....and that doesn't work either. The assistant leaves and gets another nurse and the three of them try to hold Miss Kat down and get the stitch out (just a note, if I had been there, this would have never gotten this far, NO ONE holds my kid down unless there is a serious issue...I think this could have been handled better). They fail....so they give up and say screw it, let the doctor do it!
So, then the surgeon (eventually) comes in. He walks in and says "Heard there was some trouble". He says that he thinks the stitch will come out on it's own and not to worry about it! Argh...So, he takes a peek at Miss Kat's ear and everything looked great. He gives us the go ahead for activation and he hopes to never see us again!
So, we have the new processors, the batteries are charging, and we are headed up on Wednesday! Bionic Miss Kat will hear in stereo!
(I was not at the appointment, so the entirety of this post is from the report of Hubby)
The first person that came to see Miss Kat was the surgeon's medical assistant. She asked how Miss Kat's recovery went and took a look at the healed incision. She noticed that there was a little stitch still there. It had been covered by a little scab, so it never healed. The assistant wanted to just remove the stitch (should just take a sec), so we told Miss Kat and all hell broke lose! She was pretty sure that she would die from the removal...slowly and painfully! (I didn't write about it, but we had a HUGE struggle getting the steri-strips off as well. They were supposed to come off themselves after a week, and that just didn't happen, so eventually (after more than two weeks) we had to take them off, and Miss Kat FREAKED out!)
So, Miss Kat tries to be brave and let her remove the stitch, but she was genuinely scared, so no progress is made. Miss Kat tries to sit and let her do it, but every time the assistant even comes close to touching her, she pulls away and cries. Then Daddy sits and tries to hold her head to let them get the stitch out....and that doesn't work either. The assistant leaves and gets another nurse and the three of them try to hold Miss Kat down and get the stitch out (just a note, if I had been there, this would have never gotten this far, NO ONE holds my kid down unless there is a serious issue...I think this could have been handled better). They fail....so they give up and say screw it, let the doctor do it!
So, then the surgeon (eventually) comes in. He walks in and says "Heard there was some trouble". He says that he thinks the stitch will come out on it's own and not to worry about it! Argh...So, he takes a peek at Miss Kat's ear and everything looked great. He gives us the go ahead for activation and he hopes to never see us again!
So, we have the new processors, the batteries are charging, and we are headed up on Wednesday! Bionic Miss Kat will hear in stereo!
Wednesday, July 28, 2010
Surgery #2
Miss Kat went bilateral today! Everything went very smoothly. We were at the hospital at 7am for a surgery start time of 8:30. They got us back within 10 minutes of our arrival. Miss Kat watched Spongebob and cuddled up with her Hello Kitty pillow, doll, blanket, nightgown and even shoes. By 8am the pre-op area was swarming with doctors and anesthesia came and gave Miss Kat her Versed (God bless this miracle drug!) and talked over the plan with us. Last time Miss Kat's face was super itchy from the narcotics when she woke up and the nice anesthesia man wanted to avoid this, so he drugged her completely through her IV, (and he totally succeeded!) At 8:32 they wheeled Miss Kat back into the operating room and Daddy, Grammy and I went to wait.
The surgery was scheduled to be finished at 10:45 but at 10:15 the surgeon called and let us know that everything went beautifully. The electrode was fully inserted, no complications and he didn't even need to remove the middle ear bone that he needed to last time. (Which wasn't a huge concern, I figure if he needed the space, TAKE IT, better that than having a facial nerve injury! But at least now she can take advantage of an future technology in that ear.) Everything went very well.
I was allowed to go back into the PACU (which they don't generally allow, but I played the ASL card, and they let me in!) And was there for Miss Kat waking up. It was much gentler this time, and she was less upset, but she was still pretty mad. She was upset that she couldn't lay on her ear, and she let me know that she thought Daddy should have been the one to come back, and that she wanted her scrub hat. (They let her pick a really cute hat in pre-op and promised she could take it home, and she was pretty indignant when she thought she didn't have it.)
After about a half an hour we went to her recovery room and Grammy and Daddy joined us. The nurse asked if she wanted a Popsicle or a soda and she turned to me and asked if she could have both, and I told her "Of course!". So, we watched a little more tv, and Miss Kat ate two Popsicles. Just as we were preparing for her discharge, Miss Kat got really nauseous and threw everything up....exactly like last time (on the way out the door). But, after that she felt much better and we headed home.
At home she got sick again, but after that she ate, and felt so much better. We all laid down and took a nice long nap, and when she woke up, Miss Kat was nearly back to 100%. We walked down to Redbox and rented a movie, headed to get some french fries and now we are sitting down to watch our movie.
It has been a long tough day for Miss Kat, and this morning I was questioning my decision, but really, it could be so much worse! She is up, walking around, playing with her happy meal toy, and in a few week, she'll finally have usable hearing in both ears!
The surgery was scheduled to be finished at 10:45 but at 10:15 the surgeon called and let us know that everything went beautifully. The electrode was fully inserted, no complications and he didn't even need to remove the middle ear bone that he needed to last time. (Which wasn't a huge concern, I figure if he needed the space, TAKE IT, better that than having a facial nerve injury! But at least now she can take advantage of an future technology in that ear.) Everything went very well.
I was allowed to go back into the PACU (which they don't generally allow, but I played the ASL card, and they let me in!) And was there for Miss Kat waking up. It was much gentler this time, and she was less upset, but she was still pretty mad. She was upset that she couldn't lay on her ear, and she let me know that she thought Daddy should have been the one to come back, and that she wanted her scrub hat. (They let her pick a really cute hat in pre-op and promised she could take it home, and she was pretty indignant when she thought she didn't have it.)
After about a half an hour we went to her recovery room and Grammy and Daddy joined us. The nurse asked if she wanted a Popsicle or a soda and she turned to me and asked if she could have both, and I told her "Of course!". So, we watched a little more tv, and Miss Kat ate two Popsicles. Just as we were preparing for her discharge, Miss Kat got really nauseous and threw everything up....exactly like last time (on the way out the door). But, after that she felt much better and we headed home.
At home she got sick again, but after that she ate, and felt so much better. We all laid down and took a nice long nap, and when she woke up, Miss Kat was nearly back to 100%. We walked down to Redbox and rented a movie, headed to get some french fries and now we are sitting down to watch our movie.
It has been a long tough day for Miss Kat, and this morning I was questioning my decision, but really, it could be so much worse! She is up, walking around, playing with her happy meal toy, and in a few week, she'll finally have usable hearing in both ears!
Tuesday, July 27, 2010
Pre-op #2
We had Miss Kat's pre-op appointment for her left ear, bilateral, surgery. It was a truly ridiculous appointment. We were at the hospital for two full hours! And for what? We filled out some paperwork and made sure Miss Kat didn't have an active ear infection and......nope, that was everything. Grr, we saw the surgeon for a total of 90 seconds (seriously, not exaggerating here). In those 90 seconds he did say that he would try to make the implants line up, but that it is harder than it seems because when he is inserting the second implant, Miss Kat will be laying on her other ear....well, duh, how come that very reasonable fact never crossed my mind?
Thursday, July 8, 2010
Approval for Bilaterals!
We got our insurance approval today, Miss Kat goes bilateral the 28th!!
It's very exciting because we actually had to change insurance companies because the previous plan flatly denied bilaterals! We've only had the new plan since July 1st! It's an awful big expense for the very first week!
We also like that it's only been 19 months since the first so the rehab won't have to too long and the ear should catch up to the first pretty quick. Plus, hopefully she won't end up with a "preferred" ear because it should catch up.
Miss Kat is a little nervous. When we first brought it up she HATED the idea. I asked her some questions and she explained that she had some worries. She told me she was worried it would hurt, I explained that the doctor would give us some medicine to help the pain. Then she asked how she would sleep with two big bandages on her head....I thought about it, and said "No! Your first implant is fine. It is staying the same. You aren't getting 2 implants, you are getting a SECOND implant!" She understood, and now she is excited.
It's very exciting because we actually had to change insurance companies because the previous plan flatly denied bilaterals! We've only had the new plan since July 1st! It's an awful big expense for the very first week!
We also like that it's only been 19 months since the first so the rehab won't have to too long and the ear should catch up to the first pretty quick. Plus, hopefully she won't end up with a "preferred" ear because it should catch up.
Miss Kat is a little nervous. When we first brought it up she HATED the idea. I asked her some questions and she explained that she had some worries. She told me she was worried it would hurt, I explained that the doctor would give us some medicine to help the pain. Then she asked how she would sleep with two big bandages on her head....I thought about it, and said "No! Your first implant is fine. It is staying the same. You aren't getting 2 implants, you are getting a SECOND implant!" She understood, and now she is excited.
Monday, June 7, 2010
Our Crazy Summer!
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!
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!
Thursday, April 8, 2010
Well, nevermind...
I spoke to our insurance today, and surgery has been postponed. We won't be covered until July 1st, so we had to push back Miss Kat's surgery. We will at CID summer school until July 23rd, so Miss Kat's new implant date is July 28th and activation will (probably, again scheduling issue, we are hoping to move it a little earlier) be August 30th.
I'm pretty disappointed (and I think Miss Kat will be mad about her pillow!) but there is nothing we can do about it. We had the same thing happen with her first CI. We were postponed at the very last minute last time.
Ugh, this whole process is frustrating, but the benefits are so worth it!
I'm pretty disappointed (and I think Miss Kat will be mad about her pillow!) but there is nothing we can do about it. We had the same thing happen with her first CI. We were postponed at the very last minute last time.
Ugh, this whole process is frustrating, but the benefits are so worth it!
Wednesday, April 7, 2010
HUGE News!!!
Miss Kat headed to the audiologist today. She hasn't been hearing as well as she should for the last couple of weeks, so her school audi put her in the booth, and the results were not great. She was hearing at 40 db in the lows...YIKES! So, Daddy and she took the long drive and got her tweaked. She is now back to hearing 15-25 db across the board!
While Miss Kat was in the booth they did her auditory discrimination testing and an unaided audiogram for her hearing aid ear. There was good news and bad news. The good news was that she scored 96% on her Nu Chips and Wipi tests. Not too bad! The bad news is that she has lost more hearing in her unimplanted ear. She is no longer a borderline CI candidate. (Stupid progressive loss, it really is never going to stop until she is at 120+ db....sorry, rant ended)
So, for a comparison I will post her unaided, unimplanted ear and her CI:
-- 250hz 500hz 1000hz 2000hz 4000hz 8000hz
CI- 25 db 25 db 20 db 15 db 20 db 25 db
Ear-50 db 70 db 90 db 90 db 105 db 90 db
That is a huge difference!
So, that brings me to the final, most exciting piece of news.....we have scheduled Miss Kat's bilateral surgery!! Her (tentative because of insurance issues) surgery date is May 19th! We are hoping to get her activated by June 15th because we are headed to CID for summer school! I am so happy that Miss Kat will be able to take advantage of this great opportunity with the benefit of two ear that hear well!!
We are excited and nervous but overall happy. It is so soon, but it needs to be. When we told Miss Kat she was a little worried. She very clearly remembers her last surgery. She said she was worried that it would hurt, and I explained that the doctor would give us medicine for the pain, and that if she hurt, I would give it to her. She also told me that she thought she wouldn't be able to sleep with the big bandage on her head. I told her that she could sleep on the other ear. (I think that she might have thought she was going to have a bandage on both ears, because we said "You'll have two CI's" not "You'll have ANOTHER, second CI, in the other ear". But she is clear on that now.) So, we went to the store and bought a "Hello Kitty" pillow and blanket and I told her that we will give it to her on surgery day (insert "Can I have (my) CI tomorrow?" "No" "WHY NOT??? I NEED my pillow!!" Argh...) So, now she seems to have her questions answered (except for why it isn't sooner) and she is at least willing, if not so excited.
We know this is for the best. She hears so much better with her CI than she ever did with her hearing aid (even when her loss was 20 sloping to 60db, so very long ago). It has open a whole new world of language to her. This is going to be stressful, and hard, but it will be totally worth it!
While Miss Kat was in the booth they did her auditory discrimination testing and an unaided audiogram for her hearing aid ear. There was good news and bad news. The good news was that she scored 96% on her Nu Chips and Wipi tests. Not too bad! The bad news is that she has lost more hearing in her unimplanted ear. She is no longer a borderline CI candidate. (Stupid progressive loss, it really is never going to stop until she is at 120+ db....sorry, rant ended)
So, for a comparison I will post her unaided, unimplanted ear and her CI:
-- 250hz 500hz 1000hz 2000hz 4000hz 8000hz
CI- 25 db 25 db 20 db 15 db 20 db 25 db
Ear-50 db 70 db 90 db 90 db 105 db 90 db
That is a huge difference!
So, that brings me to the final, most exciting piece of news.....we have scheduled Miss Kat's bilateral surgery!! Her (tentative because of insurance issues) surgery date is May 19th! We are hoping to get her activated by June 15th because we are headed to CID for summer school! I am so happy that Miss Kat will be able to take advantage of this great opportunity with the benefit of two ear that hear well!!
We are excited and nervous but overall happy. It is so soon, but it needs to be. When we told Miss Kat she was a little worried. She very clearly remembers her last surgery. She said she was worried that it would hurt, and I explained that the doctor would give us medicine for the pain, and that if she hurt, I would give it to her. She also told me that she thought she wouldn't be able to sleep with the big bandage on her head. I told her that she could sleep on the other ear. (I think that she might have thought she was going to have a bandage on both ears, because we said "You'll have two CI's" not "You'll have ANOTHER, second CI, in the other ear". But she is clear on that now.) So, we went to the store and bought a "Hello Kitty" pillow and blanket and I told her that we will give it to her on surgery day (insert "Can I have (my) CI tomorrow?" "No" "WHY NOT??? I NEED my pillow!!" Argh...) So, now she seems to have her questions answered (except for why it isn't sooner) and she is at least willing, if not so excited.
We know this is for the best. She hears so much better with her CI than she ever did with her hearing aid (even when her loss was 20 sloping to 60db, so very long ago). It has open a whole new world of language to her. This is going to be stressful, and hard, but it will be totally worth it!
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