Monday, June 27, 2016
Swim Lessons--FINALLY!
After 11 years of wanting Brandt to learn how to swim (his mother is scared of water so he was never allowed to learn), it's finally happening thanks to Advanced Bionics! (and our insurance!) After getting his first CI, insurance agreed to cover an Aqua Case and accessories--it's a waterproof case that holds the processor and a small battery, and also requires a special waterproof cable and headpiece. Then with the second processor, since AB was about to release a new model, they let him pick some extra accessories and he was able to get a second Aqua Case! He's just started and he's having a little trouble with floating, but I think by the end of summer he's going to be fairly confident in the water. It's such a relief and I am so thankful for this technology!
Friday, June 19, 2015
CI Activation, Take 2!
There were some nail-biting moments, but the CI has been activated!
Brandt was able to get his magnet to stick to the new implant on Monday night, so we thought there wouldn't be any problem with activation on Wednesday. But even though Beth was able to get it to "lock" fairly easily, the computer couldn't measure impedances of the electrodes, which is the first step in activation. There was a collective "ummmm....." in the room. When Brandt pushed down on the magnet, it finally connected but if he moved even slightly it was lost. Beth called Ariel over to bring a strap or something to keep the magnet pushed tight on his head. She brought a t-shirt and ripped it up, tying it around his head like The Karate Kid. It worked! Impedances were measured. "Now let's see if we can actually activate..."
Thankfully it worked, and after only a few minutes, Brandt was already understanding speech! Last time, Beth had to type everything she was saying but this time it wasn't necessary. She explained that patients often progress much faster with the second implant, because the brain already knows how to process the sound--there is "crossover in the pathway" that allows for much quicker and easier understanding. But of course it still takes some effort to teach the other ear how to hear with the new technology.
When we got home, Brandt wanted me to test him with some sentences. I decided to make up some really weird sentences where he couldn't easily guess troublesome words. I said "The purple goat quacks at lunchtime," "My cat just gave birth to 17 puppies," and "The waterfall is full of Orange Crush soda." Shouldn't really be surprising at this point, he got them all right.
Today, 48 hours post-activation, Beth decided to put Brandt in the sound booth and run some tests that are usually NEVER done this early. At 50 dB, he scored 42% on the AZ Bios sentences test. Apparently this is incredible--there are many patients who don't score that well after several weeks.
Brandt was able to get his magnet to stick to the new implant on Monday night, so we thought there wouldn't be any problem with activation on Wednesday. But even though Beth was able to get it to "lock" fairly easily, the computer couldn't measure impedances of the electrodes, which is the first step in activation. There was a collective "ummmm....." in the room. When Brandt pushed down on the magnet, it finally connected but if he moved even slightly it was lost. Beth called Ariel over to bring a strap or something to keep the magnet pushed tight on his head. She brought a t-shirt and ripped it up, tying it around his head like The Karate Kid. It worked! Impedances were measured. "Now let's see if we can actually activate..."
Thankfully it worked, and after only a few minutes, Brandt was already understanding speech! Last time, Beth had to type everything she was saying but this time it wasn't necessary. She explained that patients often progress much faster with the second implant, because the brain already knows how to process the sound--there is "crossover in the pathway" that allows for much quicker and easier understanding. But of course it still takes some effort to teach the other ear how to hear with the new technology.
When we got home, Brandt wanted me to test him with some sentences. I decided to make up some really weird sentences where he couldn't easily guess troublesome words. I said "The purple goat quacks at lunchtime," "My cat just gave birth to 17 puppies," and "The waterfall is full of Orange Crush soda." Shouldn't really be surprising at this point, he got them all right.
Today, 48 hours post-activation, Beth decided to put Brandt in the sound booth and run some tests that are usually NEVER done this early. At 50 dB, he scored 42% on the AZ Bios sentences test. Apparently this is incredible--there are many patients who don't score that well after several weeks.
Monday, June 8, 2015
CI Activation Postponed
Well, the swelling did subside somewhat, but I was only 50/50 hopeful that activation would be possible today.
Dr. Awesome said that the 'golf ball' lump is a hematoma--a mass of blood and fluid built up under the skin. The only thing that can be done for it is to wait; he said it would take a good MONTH for it to subside and that activation probably wasn't possible today. But he thinks that in another week it should be fine. He still wanted us to go over to the clinic to see if Beth could possibly get him activated.
Beth was able to get the processor to find the implant, but couldn't get the "lock" necessary for activation. Remember from last time that Brandt has a "thick scalp and skull," and coupled with all the excess swelling, today just wasn't happening. Sigh. She said this was the first time she'd ever had a patient who couldn't be activated on the scheduled date, for anything other than infection.
At least he's maintaining his reputation for being a weird patient!
Dr. Awesome said that the 'golf ball' lump is a hematoma--a mass of blood and fluid built up under the skin. The only thing that can be done for it is to wait; he said it would take a good MONTH for it to subside and that activation probably wasn't possible today. But he thinks that in another week it should be fine. He still wanted us to go over to the clinic to see if Beth could possibly get him activated.
Beth was able to get the processor to find the implant, but couldn't get the "lock" necessary for activation. Remember from last time that Brandt has a "thick scalp and skull," and coupled with all the excess swelling, today just wasn't happening. Sigh. She said this was the first time she'd ever had a patient who couldn't be activated on the scheduled date, for anything other than infection.
At least he's maintaining his reputation for being a weird patient!
Monday, June 1, 2015
Going Bilateral: CI SURGERY II
In only 8 months, Brandt has gone from Nearly Earless to Bilateral Cyborg.
Preparation for the second surgery was minimal. No 6-hour drive to Dallas for a second opinion, no long discussions about whether he should go for it or not, and I haven't spent hour upon conflicted hour crying and binge-watching 30 Rock to keep my mind off my fears. We've been here before, it's old news, and instead of being terrified I was surprisingly calm about it. Brandt always seems calm, so it was hard to tell his exact feelings. The only difference in prep this time was a VNG Balance Test, which is required for all patients getting a second CI. Brandt spent several hours wearing special goggles that tracked his eye movements as he looked at dots, and had air puffed in his ear to see how he responded. The ear about to be implanted didn't do as well as the already-implanted ear, and his results were near the cutoff of failing, but he passed and Dr. Awesome wasn't concerned.
On the morning of May 28 we checked in to Outpatient Surgery at 9:00 AM. The waiting room was PACKED, which was odd because last time we were the only ones there. We saw Dr. Awesome power-walk back and forth through the waiting room several times, as the hours dragged on. Brandt was finally called back at 11:00 for surgery prep, and I followed half an hour later. Dr. Awesome talked to us about Brandt's progress being dragged down by the nonimplanted ear. He said that this happens sometimes, it's "an issue with the integration of being bimodal." He explained that it's like trying to see with one contact and one glasses lens, and the brain can't integrate the two. Then he said "It's time for the left ear then. Let's get this done." I said "Good thing we're already here!" After another 20-plus minutes Brandt was wheeled off to surgery.
Surgery began at 1:12 PM and I expected him to be done by 2:30, since last time he was done in exactly one hour. I gave a little more time in my estimate since Dr. Awesome says it takes "exactly 90 minutes." By 2:45 I was starting to get antsy, and when Dr. Awesome finally came through the door at 3:00 I was getting worried. I couldn't tell if he looked upset or exhausted (Brandt was the fourth surgery of the day instead of the second like last time). He said everything went fine so I breathed a sigh of relief. He said that Brandt should do much better with two CIs, reiterating that "once they adjust to the implant, that natural hearing is just blah."
I knew from the previous surgery that Brandt was going to be pretty out of it when I was called back to get him ready to leave. I thought he seemed more lucid than last time but he mumbled "Why do I feel so much worse this time?" He had a male nurse who I asked for assistance in getting Brandt up and dressed (he couldn't use the "need for privacy" as an excuse like the female nurse had used last time). He was very helpful and Brandt tapped him on the arm to slur "You are a much better nurse than who I had last time." Brandt kept saying that he felt worse than before and was in more pain. I was confused because he actually seemed to be doing better. We got him loaded in the car and of course it started raining, just as it had last time. It took almost two hours to get home in the rush hour traffic, a drive that takes 45 minutes at less congested times of the day.
Brandt continued to say that he didn't know why he felt so awful, and took a lot more pain medicine than the first time. The next day he casually mentioned that his calf was sore, and I immediately called the hospital to see if we needed to rush to the emergency room, as this could be a sign of a blood clot. He also e-mailed Dr. Awesome's assistant and she echoed what I was told on the phone, that unless he developed other symptoms we shouldn't worry. Then the day after that, I got another shock when the bandage was removed. It had basically fallen off since it wasn't wrapped onto his head very tightly, and when it came off there was a golf ball sized lump behind his ear. Googling "swelling after CI surgery" resulted in conflicting advice that swelling is both 'completely normal' and 'cause for alarm.' I waited until first-thing this morning to e-mail Dr. Awesome's assistant (again) to ask if we needed to come in to the office. She asked me to send her a picture of the swelling--can you believe the Age of Technology we're living in?!--and said that yes it was swollen but there was nothing they could do about it in the office, so just make sure he continued to sleep upright and the swelling should subside.
I honestly don't see how this massive Ball-of-Swelling is going to go down enough in one week for activation to be possible...
Preparation for the second surgery was minimal. No 6-hour drive to Dallas for a second opinion, no long discussions about whether he should go for it or not, and I haven't spent hour upon conflicted hour crying and binge-watching 30 Rock to keep my mind off my fears. We've been here before, it's old news, and instead of being terrified I was surprisingly calm about it. Brandt always seems calm, so it was hard to tell his exact feelings. The only difference in prep this time was a VNG Balance Test, which is required for all patients getting a second CI. Brandt spent several hours wearing special goggles that tracked his eye movements as he looked at dots, and had air puffed in his ear to see how he responded. The ear about to be implanted didn't do as well as the already-implanted ear, and his results were near the cutoff of failing, but he passed and Dr. Awesome wasn't concerned.
On the morning of May 28 we checked in to Outpatient Surgery at 9:00 AM. The waiting room was PACKED, which was odd because last time we were the only ones there. We saw Dr. Awesome power-walk back and forth through the waiting room several times, as the hours dragged on. Brandt was finally called back at 11:00 for surgery prep, and I followed half an hour later. Dr. Awesome talked to us about Brandt's progress being dragged down by the nonimplanted ear. He said that this happens sometimes, it's "an issue with the integration of being bimodal." He explained that it's like trying to see with one contact and one glasses lens, and the brain can't integrate the two. Then he said "It's time for the left ear then. Let's get this done." I said "Good thing we're already here!" After another 20-plus minutes Brandt was wheeled off to surgery.
Surgery began at 1:12 PM and I expected him to be done by 2:30, since last time he was done in exactly one hour. I gave a little more time in my estimate since Dr. Awesome says it takes "exactly 90 minutes." By 2:45 I was starting to get antsy, and when Dr. Awesome finally came through the door at 3:00 I was getting worried. I couldn't tell if he looked upset or exhausted (Brandt was the fourth surgery of the day instead of the second like last time). He said everything went fine so I breathed a sigh of relief. He said that Brandt should do much better with two CIs, reiterating that "once they adjust to the implant, that natural hearing is just blah."
I knew from the previous surgery that Brandt was going to be pretty out of it when I was called back to get him ready to leave. I thought he seemed more lucid than last time but he mumbled "Why do I feel so much worse this time?" He had a male nurse who I asked for assistance in getting Brandt up and dressed (he couldn't use the "need for privacy" as an excuse like the female nurse had used last time). He was very helpful and Brandt tapped him on the arm to slur "You are a much better nurse than who I had last time." Brandt kept saying that he felt worse than before and was in more pain. I was confused because he actually seemed to be doing better. We got him loaded in the car and of course it started raining, just as it had last time. It took almost two hours to get home in the rush hour traffic, a drive that takes 45 minutes at less congested times of the day.
Brandt continued to say that he didn't know why he felt so awful, and took a lot more pain medicine than the first time. The next day he casually mentioned that his calf was sore, and I immediately called the hospital to see if we needed to rush to the emergency room, as this could be a sign of a blood clot. He also e-mailed Dr. Awesome's assistant and she echoed what I was told on the phone, that unless he developed other symptoms we shouldn't worry. Then the day after that, I got another shock when the bandage was removed. It had basically fallen off since it wasn't wrapped onto his head very tightly, and when it came off there was a golf ball sized lump behind his ear. Googling "swelling after CI surgery" resulted in conflicting advice that swelling is both 'completely normal' and 'cause for alarm.' I waited until first-thing this morning to e-mail Dr. Awesome's assistant (again) to ask if we needed to come in to the office. She asked me to send her a picture of the swelling--can you believe the Age of Technology we're living in?!--and said that yes it was swollen but there was nothing they could do about it in the office, so just make sure he continued to sleep upright and the swelling should subside.
I honestly don't see how this massive Ball-of-Swelling is going to go down enough in one week for activation to be possible...
Sunday, March 29, 2015
Unexpected Diagnosis
Over spring break, Brandt went back to see Beth for a third time to try to figure out why his CI performance has been going downhill the past few months. She has tested him several times and he's still scoring very high, but in real-world situations he's just not doing as well as he did shortly after activation. At first he thought it was due to congestion, since he'd had a cold that stuffed up his nose. But after the cold went away he still wasn't doing well, and after several weeks of taking decongestant and two different allergy medications, it hadn't improved. My mom and Josie have both asked me "Have you noticed that Brandt isn't doing as well as he was a few months ago? Is it just me or is he getting worse?!"
So at the third appointment trying to figure out the problem, Beth suggested that it might be that Brandt's left (aided) ear is getting worse and is dragging down the progress of the implanted ear--and her recommendation is to go ahead and get it implanted as well. WHAT?!?!
I had actually asked Beth a few months ago about implanting the other ear, since he was doing so well, and she said it was something he could consider if he wanted. But Brandt wasn't in a hurry to get his other ear operated on, which is very understandable of course. I was just so excited about his success, I figured having bilateral success would be even better. He said he'd get it done eventually but didn't see the need anytime soon. Well, the need has unexpectedly arisen.
Due to an upcoming change in his job situation, the surgery needed to be done by early June, but they were scheduling into mid-July. Brandt shrugged and said "Oh well, guess it'll have to wait a year or two after all" but I was NOT going to give up without a fight! I e-mailed Dr. Awesome's assistant, explained the situation, and now he is scheduled for surgery on May 28! I'm just shocked at this turn of events. We knew another surgery was in our future, but we didn't expect the future to get here so soon.
So at the third appointment trying to figure out the problem, Beth suggested that it might be that Brandt's left (aided) ear is getting worse and is dragging down the progress of the implanted ear--and her recommendation is to go ahead and get it implanted as well. WHAT?!?!
I had actually asked Beth a few months ago about implanting the other ear, since he was doing so well, and she said it was something he could consider if he wanted. But Brandt wasn't in a hurry to get his other ear operated on, which is very understandable of course. I was just so excited about his success, I figured having bilateral success would be even better. He said he'd get it done eventually but didn't see the need anytime soon. Well, the need has unexpectedly arisen.
Due to an upcoming change in his job situation, the surgery needed to be done by early June, but they were scheduling into mid-July. Brandt shrugged and said "Oh well, guess it'll have to wait a year or two after all" but I was NOT going to give up without a fight! I e-mailed Dr. Awesome's assistant, explained the situation, and now he is scheduled for surgery on May 28! I'm just shocked at this turn of events. We knew another surgery was in our future, but we didn't expect the future to get here so soon.
Friday, October 31, 2014
"Success"!
Remember how I said last week that Beth considers "success" to be a score of 80% or higher on AZ Bios at 50 decibels? Well, we have achieved SUCCESS! At only 3 weeks post-activation!!! Today Brandt scored 83%. EIGHTY-THREE. I am completely blown away. Even more impressive, I think, was his CNC scores--64% on total words (versus 38% last week and 8% pre-CI [at 10dB louder]) and 81% on phonemes (versus 65% last week and 31% pre-CI [at 10dB louder]).
This is just mind-boggling. Ariel was beyond thrilled and said she didn't need to meet with us anymore because he's doing so great. I was rather conflicted about that, I thought we were going to be coming in for months and months for therapy and instead we're told that we don't need her anymore!
A few anecdotes from Brandt on his success:
Our girl-cat jumped up in his lap and started purring loudly. I asked if he could hear it and he nodded. "So how long has it been since you heard a cat purr? 20 years at least?" I asked. "I'm actually not sure if I've ever heard a cat purr before..." he responded.
On the difference between his implanted and aided ear: "My left [aided] ear is so uncomfortable. The canal is hot and itchy, the sound is soft and muffled. Compare it to my right [implanted] ear, which is loud and clear, and doesn't hurt at all. The CI side is so much better."
He has been able to listen to NPR in the car for the first time in a year. He's always hated music but used to listen to NPR, particularly "Car Talk" and "The Diane Rehm Show," but had to give up on it because he was struggling too much.
On watching TV being bimodal: "I like being able to watch Star Trek in stereo! Now I have one ear for dialogue, and one for sound effects!"
This is just mind-boggling. Ariel was beyond thrilled and said she didn't need to meet with us anymore because he's doing so great. I was rather conflicted about that, I thought we were going to be coming in for months and months for therapy and instead we're told that we don't need her anymore!
A few anecdotes from Brandt on his success:
Our girl-cat jumped up in his lap and started purring loudly. I asked if he could hear it and he nodded. "So how long has it been since you heard a cat purr? 20 years at least?" I asked. "I'm actually not sure if I've ever heard a cat purr before..." he responded.
On the difference between his implanted and aided ear: "My left [aided] ear is so uncomfortable. The canal is hot and itchy, the sound is soft and muffled. Compare it to my right [implanted] ear, which is loud and clear, and doesn't hurt at all. The CI side is so much better."
He has been able to listen to NPR in the car for the first time in a year. He's always hated music but used to listen to NPR, particularly "Car Talk" and "The Diane Rehm Show," but had to give up on it because he was struggling too much.
On watching TV being bimodal: "I like being able to watch Star Trek in stereo! Now I have one ear for dialogue, and one for sound effects!"
Thursday, October 23, 2014
2 Weeks Post-Activation
Last night's speech therapy was beyond impressive. Brandt only missed one of the Ling-6 sounds (he thought I said "oo" instead of "mm"--it's always been his most-missed sound) and I recited them three times, so he got a 94%! For the first vowel word list (kin, keen, cane, can, con, coon, kern, coin, kine), he got EVERY SINGLE ONE RIGHT! And I repeated them all several times. I decided to try a second list (high, hoe, hay, how, who, huh, ha, he, hoy, her) and he only missed one--huh and ha sounded the same at first.
On the list of 25 random sentences, he got them all right again, same as last time. This was after he read the sentences aloud before I randomly recited them. I said, "I bet tomorrow Ariel will tell you to start doing these lists without reading them first." He said, "Let's try it!" I expected he would struggle, but yet again he proved me wrong! He only missed two words out of the entire list!! Jim instead of Jeff, and Don't laugh at the little puppy instead of They'll laugh at the little puppy.
And I forgot to mention that this is all done with his eyes closed so he can't lip read. A-M-A-Z-I-N-G.
Today was the 2-week post-activation appointment. Brandt went into the sound booth for testing, this time the AZ Bio (sentences with different speakers) and CNC (one-syllable, three-phoneme words) tests that he has done in the past for evaluations. Beth warned him, "it's going to be hard today, I expect it to be hard." But for the AZ Bio sentences, he did so well that Beth told him, "You did such a great job, I'm going to make it a little harder--it's going to be softer." He still did pretty well. He didn't do as well with the CNC words, but I was really struggling to understand some of them myself. When Beth opened the door to the sound booth, she had a huge smile on her face and said, "You did great, really really awesome!"
Beth took out Brandt's scores from May, the appointment I had missed because I had no idea he was being retested (and would be approved) that day. He had previously scored 39% on the AZ Bio sentences at 60 decibels; today, he scored 76%!!! At 50 decibels, he scored 61%. Beth said that she considers "success" to be eventually scoring 80% at 50 decibels, and she "has no doubt that he will get there!" On the CNC test, in May he scored only 8% on getting the entire word correct; today he scored 38%. For the individual phonemes, he scored 31% in May and 65% today. And he was tested at 10 decibels lower today than he was in May. Beth said, "You have exceeded my expectations--and your own." Then she told us that now the focus will be more on understanding than just detecting sound. Progress!
Ariel was very excited when we met for listening therapy. When we were first walking through the parking lot to the appointment, she yelled "Hey guys!" behind us. Brandt turned and looked at her and she was very surprised that he heard her. During our appointment she said, "You don't realize the significance of your hearing me from a distance in the parking lot, but I do!" Brandt said, "Maybe I shouldn't tell you this, but I had no idea it was you or what you were saying, I just heard noise." She said, "That's fine! Just the fact that you heard me and responded at all is great! I have stood in the waiting room calling your name six times, getting closer and closer to you, and you were totally oblivious. You haven't had passive listening skills in quite a while. This is a big step."
He got ALL of the Ling-6 sounds correct, nearly all the vowel words, and all of the sentences. Ariel added rhyming words to our protocol: cat, fat, mat, bat, etc. She originally included sat but took it out, realizing that he was going to confuse fat and sat. She kept having to remind him that sat wasn't an option, because he kept hearing it instead of fat. Then she switched to a list of high-frequency sounds: fee, see, she, vee, zee, the. I thought these would be nearly impossible for him to distinguish, but he did remarkably well. Ariel and I were joking that towards the end, they all sounded exactly alike. I had no idea whether she was saying vee, zee, or the. Lastly she read some short stories about animals and asked questions about them, and again he did amazingly well.
I'm still in awe of how well this is going. I guess after five years of torment in the Gray Area, we deserved some relief.
On the list of 25 random sentences, he got them all right again, same as last time. This was after he read the sentences aloud before I randomly recited them. I said, "I bet tomorrow Ariel will tell you to start doing these lists without reading them first." He said, "Let's try it!" I expected he would struggle, but yet again he proved me wrong! He only missed two words out of the entire list!! Jim instead of Jeff, and Don't laugh at the little puppy instead of They'll laugh at the little puppy.
And I forgot to mention that this is all done with his eyes closed so he can't lip read. A-M-A-Z-I-N-G.
Today was the 2-week post-activation appointment. Brandt went into the sound booth for testing, this time the AZ Bio (sentences with different speakers) and CNC (one-syllable, three-phoneme words) tests that he has done in the past for evaluations. Beth warned him, "it's going to be hard today, I expect it to be hard." But for the AZ Bio sentences, he did so well that Beth told him, "You did such a great job, I'm going to make it a little harder--it's going to be softer." He still did pretty well. He didn't do as well with the CNC words, but I was really struggling to understand some of them myself. When Beth opened the door to the sound booth, she had a huge smile on her face and said, "You did great, really really awesome!"
Beth took out Brandt's scores from May, the appointment I had missed because I had no idea he was being retested (and would be approved) that day. He had previously scored 39% on the AZ Bio sentences at 60 decibels; today, he scored 76%!!! At 50 decibels, he scored 61%. Beth said that she considers "success" to be eventually scoring 80% at 50 decibels, and she "has no doubt that he will get there!" On the CNC test, in May he scored only 8% on getting the entire word correct; today he scored 38%. For the individual phonemes, he scored 31% in May and 65% today. And he was tested at 10 decibels lower today than he was in May. Beth said, "You have exceeded my expectations--and your own." Then she told us that now the focus will be more on understanding than just detecting sound. Progress!
Ariel was very excited when we met for listening therapy. When we were first walking through the parking lot to the appointment, she yelled "Hey guys!" behind us. Brandt turned and looked at her and she was very surprised that he heard her. During our appointment she said, "You don't realize the significance of your hearing me from a distance in the parking lot, but I do!" Brandt said, "Maybe I shouldn't tell you this, but I had no idea it was you or what you were saying, I just heard noise." She said, "That's fine! Just the fact that you heard me and responded at all is great! I have stood in the waiting room calling your name six times, getting closer and closer to you, and you were totally oblivious. You haven't had passive listening skills in quite a while. This is a big step."
He got ALL of the Ling-6 sounds correct, nearly all the vowel words, and all of the sentences. Ariel added rhyming words to our protocol: cat, fat, mat, bat, etc. She originally included sat but took it out, realizing that he was going to confuse fat and sat. She kept having to remind him that sat wasn't an option, because he kept hearing it instead of fat. Then she switched to a list of high-frequency sounds: fee, see, she, vee, zee, the. I thought these would be nearly impossible for him to distinguish, but he did remarkably well. Ariel and I were joking that towards the end, they all sounded exactly alike. I had no idea whether she was saying vee, zee, or the. Lastly she read some short stories about animals and asked questions about them, and again he did amazingly well.
I'm still in awe of how well this is going. I guess after five years of torment in the Gray Area, we deserved some relief.
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