So yesterday Kaelen had his follow-up hearing test at Australian Hearing. Whenever there's a significant change in someone's hearing, the initial test must be repeated 2 weeks later to confirm that those levels are still true before clinical decisions are made, much like when newborns are screened or tested if they don't pass the screening tests. That was yesterday's appointment.
I had been checking in with Kaelen throughout the 2 weeks to see how the ear was going, just in case there was a recovery. In my experience, what's recovered at about 1 week after the drop is pretty much all they're going to have, & sadly he didn't have any noticable change in that time. Each time I asked him about it, he said it was the same - no better, still not working.
The test results were, therefore, not entirely unexpected. They checked both ears, as always. The left ear has thankfully remained where it has always been but his right ear, the one which moved 3 weeks ago now, was either the same or worse across all frequencies. Then they did a test which we haven't had very often before, a single word test. They use inserts into the ears, so it's unaided, and they play a single word into one ear at a time to see what each ear is doing in terms of speech & language recognition. These results were simply mind-boggling.
In his right ear, he heard what he described as "a high beep", or "a low car horn". They stopped testing after 4 words, because it was obvious that he wasn't actually hearing words. Then they did the left ear. Although he didn't get every word perfectly correct, he actually recognised word shapes for every example given. So his left ear, previously his weaker ear, heard words quite clearly & in some cases absolutely correctly, but his right ear, previously his stronger ear, heard beeps & car horns.
Where does an ear go to die? Wherever that is, that's where his right ear has gone. There's nothing worth preserving there, even though the audiogram says he has some hearing left in that ear. My understanding is that we're being referred to the cochlear implant clinic.
Oh, and our ENT called on Tuesday with the CT scan results. Enlarged Vestibular Aqueduct bilaterally (both sides), but normal morphology of all other ear structures (middle ear bones, semicircular canals, cochleae). So now we know why his hearing is able to move, just not why it did this time...
Next appt: Wed 22nd May, implant surgeon initial consultation
Thursday, May 2, 2019
Monday, April 29, 2019
Blowing off the dust...
Wow, it's amazing to think that it's nearly 5 years since I've posted here - been too busy doing everything to write about it! My last post covered Jonica's cochlear implant switch-on & a few weeks after, as well as the waiting regarding Jarrah's hole in his left eardrum. While these are not the reason for today's post, I will give the briefest possible update on both of these, for continuity...
Jonica has continued to do extremely well with her implant. She is now 8-1/2, in Grade 3 at mainstream school & doing so well that if you didn't know she was deaf, you just wouldn't know. While she does still struggle to hear perfectly in challenging listening environments like the car or at the shops, she is in every other regard a normal, cheeky 8-year-old. If anything happened to her right ear & she required a second implant, I would have no hesitation about saying yes.
Jarrah's left ear pottered along for a while, continuing to be a bit of a nuisance really. Finally, when he was about 9-3/4, at yet another ENT appointment for more discharge, I said, " what about we patch this eardrum, hey?" Thankfully our ENT agreed, so surgery was set for late March 2016. Basically they did a skin graft over the hole in the eardrum; this was successful in that the eardrum was now water-tight, but his ear continued to be wet inside, even when there was no active infection.
After observing this for around 2 years (!), and a number more rounds of drops later, our ENT decided that it was time for more surgery. He had what's called myringitis, which I think is like a crusting of the skin, almost like how a wound would weep, which doesn't heal properly. Unfortunately, due to the shape of Jarrah's ear canal, there was a small portion of his eardrum that wasn't visible & this seemed to be the source of the myringitis. So surgery was planned for June 2018 to scrape out the myringitis, redo the graft just to be sure, & drill back the bone in the ear canal so that all of the eardrum was visible. He was last on the list for the afternoon, we waited til nearly 5pm before he went in, & surgery took a little longer than I expected but finally it was done. Since he was still drowsy at about 8pm, I decided we'd stay in overnight. Thankfully Kaelen was with my parents & Jonica was with some other friends who kindly offered to have her stay overnight too!
Apart from the raging case of chicken pox we think he caught in the hospital waiting room, this surgery has been an overwhelming success. His left ear is finally dry, for the first time in about 10 years!! No drops or discharge of any sort since the surgery, which is a bit of a record.
So, you may be wondering why we're here, why I'm posting here today. We've just had the Easter school holidays here in Queensland, and during the holidays we had a little adventure. Late in the first week, Kaelen all of a sudden told me that one of his ears had stopped working. I checked the sound in his hearing aids, knowing that they had both only just come back from repair within the previous few weeks, & that he'd had his annual hearing test only 6wks earlier. He insisted, though, that it wasn't working...but I could hear the hearing aid. Hmmm. He'd mentioned some other odd sounds over the preceding 6-8wks, but I thought I'd just watch it for a few days to see if he was just being a bit dramatic (it's happened!) or if it was for real. By Monday he was still saying it was quiet, to the point where he was becoming unwilling to wear the hearing aid as he wasn't getting anything from it.
I don't like the sound of that.
So I dug out my trusty uHear app, plugged him in & got him to do a test. It didn't look good. Ugh.
I thought it over through the day, but by the afternoon had decided we needed to see what was really going on, so I made appointments with both our ENT & Australian Hearing. ENT was about 2 weeks away, but Aus Hearing were able to see us the next morning, which was fantastic.
What wasn't fantastic were his results. Oh my. His left ear was unchanged, but he'd lost about 40db across all frequencies in his right ear. For a kid who already had a moderately severe loss in that ear, that's catastrophic.
The very odd thing about this is that his hearing thresholds have never moved. He's been the most stable of the 3 kids, and there didn't seem to be a trigger event - no sickness or injury, nothing that would *usually* indicate the possibility of a hearing drop. It just...went.
The next day I contacted our ENT to see if we could move the appointment sooner, & to see if a course of prednisone might help. There has been some evidence of improvement is these sorts of cases, but sadly we haven't seen any. We did manage to move the appointment though, so that was good.
Right now, we're in limbo. We saw the ENT last Wed 23rd April, just to make sure there's no physiological reason why this might have happened. There wasn't, so we talked through our options, although there aren't many. Given his current level of loss in that right ear, Kaelen is now a candidate for a cochlear implant. In fact, the hearing level at which children are being implanted these days is dropping, so his may well be a candidate for implants in both ears. This will need to be discussed with the implant surgeon, although we don't need to decide right away. So our ENT ordered a CT scan & gave us a referral to the implant surgeon, & now we just do the next thing & the next thing & the next thing.
We had the CT scan on Sat 27th April. Uneventful, but they're looking at morphology, the shapes & structures in his ears, specifically checking for Enlarged Vestibular Aqueduct (which Jonica has, & is one of the things that causes fluctuating hearing loss) & probably cochlear structure also as Jonica has the Mondini defect (cochlea's that only turn 1.5 times, not 2.5 times as expected). I expect to hear from the ENT sometime this week with those results.
Today I made the appointment with the implant surgeon, but that's not for another 3 weeks. This week's job is the follow-up hearing test to confirm the results from 2 weeks ago. That's on Wednesday, 11am. I looked back through my calendar to the year that Jonica got her implant, & between her follow-up hearing test & surgery there were 7 appointments; 1 x Ct scan, 2 x implant surgeon, 2 x hospital audiology & 2 x hospital speech pathology. As if I needed anything more in this already busy term! And then post-surgery will be incessant mapping & speech therapy to get that ear going...I think that's just about got my year sorted out!
I'll try to update this page after each appointment or development - hopefully with fewer words than this, although this has covered 5 years!
Next appt: Wed 1st May 11am, follow-up hearing test @ Aus Hearing
Jonica has continued to do extremely well with her implant. She is now 8-1/2, in Grade 3 at mainstream school & doing so well that if you didn't know she was deaf, you just wouldn't know. While she does still struggle to hear perfectly in challenging listening environments like the car or at the shops, she is in every other regard a normal, cheeky 8-year-old. If anything happened to her right ear & she required a second implant, I would have no hesitation about saying yes.
Jarrah's left ear pottered along for a while, continuing to be a bit of a nuisance really. Finally, when he was about 9-3/4, at yet another ENT appointment for more discharge, I said, " what about we patch this eardrum, hey?" Thankfully our ENT agreed, so surgery was set for late March 2016. Basically they did a skin graft over the hole in the eardrum; this was successful in that the eardrum was now water-tight, but his ear continued to be wet inside, even when there was no active infection.
After observing this for around 2 years (!), and a number more rounds of drops later, our ENT decided that it was time for more surgery. He had what's called myringitis, which I think is like a crusting of the skin, almost like how a wound would weep, which doesn't heal properly. Unfortunately, due to the shape of Jarrah's ear canal, there was a small portion of his eardrum that wasn't visible & this seemed to be the source of the myringitis. So surgery was planned for June 2018 to scrape out the myringitis, redo the graft just to be sure, & drill back the bone in the ear canal so that all of the eardrum was visible. He was last on the list for the afternoon, we waited til nearly 5pm before he went in, & surgery took a little longer than I expected but finally it was done. Since he was still drowsy at about 8pm, I decided we'd stay in overnight. Thankfully Kaelen was with my parents & Jonica was with some other friends who kindly offered to have her stay overnight too!
Apart from the raging case of chicken pox we think he caught in the hospital waiting room, this surgery has been an overwhelming success. His left ear is finally dry, for the first time in about 10 years!! No drops or discharge of any sort since the surgery, which is a bit of a record.
So, you may be wondering why we're here, why I'm posting here today. We've just had the Easter school holidays here in Queensland, and during the holidays we had a little adventure. Late in the first week, Kaelen all of a sudden told me that one of his ears had stopped working. I checked the sound in his hearing aids, knowing that they had both only just come back from repair within the previous few weeks, & that he'd had his annual hearing test only 6wks earlier. He insisted, though, that it wasn't working...but I could hear the hearing aid. Hmmm. He'd mentioned some other odd sounds over the preceding 6-8wks, but I thought I'd just watch it for a few days to see if he was just being a bit dramatic (it's happened!) or if it was for real. By Monday he was still saying it was quiet, to the point where he was becoming unwilling to wear the hearing aid as he wasn't getting anything from it.
I don't like the sound of that.
So I dug out my trusty uHear app, plugged him in & got him to do a test. It didn't look good. Ugh.
I thought it over through the day, but by the afternoon had decided we needed to see what was really going on, so I made appointments with both our ENT & Australian Hearing. ENT was about 2 weeks away, but Aus Hearing were able to see us the next morning, which was fantastic.
What wasn't fantastic were his results. Oh my. His left ear was unchanged, but he'd lost about 40db across all frequencies in his right ear. For a kid who already had a moderately severe loss in that ear, that's catastrophic.
The very odd thing about this is that his hearing thresholds have never moved. He's been the most stable of the 3 kids, and there didn't seem to be a trigger event - no sickness or injury, nothing that would *usually* indicate the possibility of a hearing drop. It just...went.
The next day I contacted our ENT to see if we could move the appointment sooner, & to see if a course of prednisone might help. There has been some evidence of improvement is these sorts of cases, but sadly we haven't seen any. We did manage to move the appointment though, so that was good.
Right now, we're in limbo. We saw the ENT last Wed 23rd April, just to make sure there's no physiological reason why this might have happened. There wasn't, so we talked through our options, although there aren't many. Given his current level of loss in that right ear, Kaelen is now a candidate for a cochlear implant. In fact, the hearing level at which children are being implanted these days is dropping, so his may well be a candidate for implants in both ears. This will need to be discussed with the implant surgeon, although we don't need to decide right away. So our ENT ordered a CT scan & gave us a referral to the implant surgeon, & now we just do the next thing & the next thing & the next thing.
We had the CT scan on Sat 27th April. Uneventful, but they're looking at morphology, the shapes & structures in his ears, specifically checking for Enlarged Vestibular Aqueduct (which Jonica has, & is one of the things that causes fluctuating hearing loss) & probably cochlear structure also as Jonica has the Mondini defect (cochlea's that only turn 1.5 times, not 2.5 times as expected). I expect to hear from the ENT sometime this week with those results.
Today I made the appointment with the implant surgeon, but that's not for another 3 weeks. This week's job is the follow-up hearing test to confirm the results from 2 weeks ago. That's on Wednesday, 11am. I looked back through my calendar to the year that Jonica got her implant, & between her follow-up hearing test & surgery there were 7 appointments; 1 x Ct scan, 2 x implant surgeon, 2 x hospital audiology & 2 x hospital speech pathology. As if I needed anything more in this already busy term! And then post-surgery will be incessant mapping & speech therapy to get that ear going...I think that's just about got my year sorted out!
I'll try to update this page after each appointment or development - hopefully with fewer words than this, although this has covered 5 years!
Next appt: Wed 1st May 11am, follow-up hearing test @ Aus Hearing
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