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
Friday, September 5, 2014
Oops...I'm a bit behind...
Sorry folks, I'll try to cover the last few weeks in one post...
Tues 19th Aug - Post-op check-up
Went to see our surgeon this morning, to see how things were healing after surgery last week. He was very pleased with the wound, no infection, seems to be healing up nicely. Sutures were removed and we can wash her hair again, hooray! Wants to see us again in Nov just to make sure all is well...which means a new referral, bother.
Jarrah has had a cough for quite a few weeks now so I checked in his ears, saw they were a bit moist and saw what I thought was still a hole in his left eardrum. He had a grommet removed about 12 months ago, and our ENT said it can take 3-6mths for the eardrum to heal over. I emailed them to see what they thought we should do and they rang me to say they'd like to check it out just to make sure all is ok. Fortunately I was able to get an appt on the same day as Jonica's post-op check and the clinics are about 300m apart, so we went straight from Jonica's appt to Jarrah's!
I was right - there is still a hole in his eardrum. Rats. What to do? Well, not much it seems. Since he has a history of retaining fluid in his middle ear, the ENT is hesitant to patch the hole just yet. What's the point of patching it, only to find we've got to go and put another grommet in it? So, we wait. Until he's 10. That's 2 years! 2 more years of blu-tak at bath-time, 2 more years of blu-tak in swimming pools...not a huge problem, just inconvenient. The hole doesn't appear to have changed much since January 2014 (about 8 months) so personally I think we're going to be patching it in 2 years' time...
Tues 2nd Sept - Switch-on!!
What an exciting day! Jonica has been eagerly waiting for today, saying to me many, many times, "But Mum, I need my implant!" Keith is still not working so he was able to attend the appt too, which was wonderful. We took the boys to school then jumped on a bus to the hospital, arriving in plenty of time.
We met our audiologist, who had everything setup and ready, and began to talk through what would happen. First, some beeps to see if Jonica registered anything at all. Then some tones to get a basic map of her frequencies. Then, the moment we had all been waiting for - real, live switch-on! The beeps went fine. The tones went fine. Then it was time to remove her other hearing aid, switch the implant on for real, and see what she could really hear! I can't describe it - you'd better watch it...
Wow! Amazing! Granted, she may have been lip-reading some of those words, but just the fact that she could understand most of the words was incredible, and bodes very well for the future. She loves wearing her implant, which is also wonderful, and the next morning I asked her some simple questions and she seemed to understand exactly what I was saying then too.
It will take a while for her left ear to get used to the new sound, as an implant is not like natural hearing, so it's only running at a soft volume at the moment. Gradually, as she wears it, her brain will learn to re-interpret the signals it's getting as sound, and will integrate that signal with what she hears in her right ear so that she won't really hear the difference. We need to attend intensive speech therapy over the next 6-12mths to help that process, but we're so pleased that she's doing so well already. I'll be very interested to see if I notice improvements in her speech over the coming weeks...
A side note, in case you're interested: I've just been reading back over some old posts and found my wish for a home hearing test kit. Well, there's an app for that! Sure, doesn't give you numbers in terms of decibels, but places your results in a range that means something - Mild, Moderate, Severe, Profound - and is pretty comprehensive, testing at least 6 frequencies. So, if you're worried about your hearing or that of someone in your family, check out uHear on the Apple App store. Wish there was an iPad version, but it's now firmly installed on my phone so that at the first sign of deterioration I can get some idea of what's going on...
Next appts: Tues 9th Sept Implant mapping, and first Implant speech therapy
Tues 19th Aug - Post-op check-up
Went to see our surgeon this morning, to see how things were healing after surgery last week. He was very pleased with the wound, no infection, seems to be healing up nicely. Sutures were removed and we can wash her hair again, hooray! Wants to see us again in Nov just to make sure all is well...which means a new referral, bother.
Jarrah has had a cough for quite a few weeks now so I checked in his ears, saw they were a bit moist and saw what I thought was still a hole in his left eardrum. He had a grommet removed about 12 months ago, and our ENT said it can take 3-6mths for the eardrum to heal over. I emailed them to see what they thought we should do and they rang me to say they'd like to check it out just to make sure all is ok. Fortunately I was able to get an appt on the same day as Jonica's post-op check and the clinics are about 300m apart, so we went straight from Jonica's appt to Jarrah's!
I was right - there is still a hole in his eardrum. Rats. What to do? Well, not much it seems. Since he has a history of retaining fluid in his middle ear, the ENT is hesitant to patch the hole just yet. What's the point of patching it, only to find we've got to go and put another grommet in it? So, we wait. Until he's 10. That's 2 years! 2 more years of blu-tak at bath-time, 2 more years of blu-tak in swimming pools...not a huge problem, just inconvenient. The hole doesn't appear to have changed much since January 2014 (about 8 months) so personally I think we're going to be patching it in 2 years' time...
Tues 2nd Sept - Switch-on!!
What an exciting day! Jonica has been eagerly waiting for today, saying to me many, many times, "But Mum, I need my implant!" Keith is still not working so he was able to attend the appt too, which was wonderful. We took the boys to school then jumped on a bus to the hospital, arriving in plenty of time.
We met our audiologist, who had everything setup and ready, and began to talk through what would happen. First, some beeps to see if Jonica registered anything at all. Then some tones to get a basic map of her frequencies. Then, the moment we had all been waiting for - real, live switch-on! The beeps went fine. The tones went fine. Then it was time to remove her other hearing aid, switch the implant on for real, and see what she could really hear! I can't describe it - you'd better watch it...
Wow! Amazing! Granted, she may have been lip-reading some of those words, but just the fact that she could understand most of the words was incredible, and bodes very well for the future. She loves wearing her implant, which is also wonderful, and the next morning I asked her some simple questions and she seemed to understand exactly what I was saying then too.
It will take a while for her left ear to get used to the new sound, as an implant is not like natural hearing, so it's only running at a soft volume at the moment. Gradually, as she wears it, her brain will learn to re-interpret the signals it's getting as sound, and will integrate that signal with what she hears in her right ear so that she won't really hear the difference. We need to attend intensive speech therapy over the next 6-12mths to help that process, but we're so pleased that she's doing so well already. I'll be very interested to see if I notice improvements in her speech over the coming weeks...
A side note, in case you're interested: I've just been reading back over some old posts and found my wish for a home hearing test kit. Well, there's an app for that! Sure, doesn't give you numbers in terms of decibels, but places your results in a range that means something - Mild, Moderate, Severe, Profound - and is pretty comprehensive, testing at least 6 frequencies. So, if you're worried about your hearing or that of someone in your family, check out uHear on the Apple App store. Wish there was an iPad version, but it's now firmly installed on my phone so that at the first sign of deterioration I can get some idea of what's going on...
Next appts: Tues 9th Sept Implant mapping, and first Implant speech therapy
Wednesday, August 20, 2014
"I have an implant!"
How does one begin a post like this? I don't know, but here goes.
If you've been reading this recently, you'll know that Jonica was due to have surgery on Mon 11th August to receive a cochlear impact in her left ear. It happened, it all went ahead, it's just taken me a while to get around to writing about it, but I want to do it while it's all relatively fresh in my head. She was very excited about receiving the implant - until it was actually time to go to surgery - and spent most of the 2-3wks prior asking for it, or asking when she was going to get it, or saying she needed it!
So finally Mon 11th August arrived. Daddy took the boys to school, I quickly packed our bags, my dear friend mc dropped in for a quick chat and then, before we knew it, it was time to go. We arrived at the hospital about 10:45am, Daddy dropped us off, and we found our way to the Children's admission desk. We checked in and they took us to our bed, which was in a room shared with two others. Jonica had to fast from the previous night, which meant i did too, so I had to politely decline when they came round offering lunch...*sniff*...
Her surgery was scheduled for 2:30pm, so I didn't bother making her have a nap - figured she was going to get one anyway! Thankfully each bed has a TV, so we switched on ABC4Kids and she was set. The anaesthetist came around to do her final checks, and then it was just a waiting game.
They did come and get us at 2:30, so thankfully we didn't have a long, drawn-out wait. Down to the Pre-op room, which was decorated amazingly (see photo!), where we had a quick visit from the surgeon who marked which side they were doing with an arrow and his initials - just to make sure! Lots of toys for the kids to play with so there was little stress involved, which was lovely. Then, about 2:50pm, time for the anaesthetic...
Unfortunately, last week's experience in Toowoomba was still fresh in Jonica's mind. She had not been allowed to sit on Daddy then, she had been asleep on pre-medication and woke up on the way to theatre so was somewhat disoriented, which made for an unpleasant experience. She was not at all keen to repeat this experience, so despite being allowed to sit on me and sing songs, there was no way she was letting that mask anywhere near her face. Our anaesthetist was fantastic, spoke to Jonica entirely appropriately for such a little girl, and finally improvised using her own hand to get enough gas into Jonica to at least get her drowsy before bringing in the mask to get her off to sleep. Jonica was already tired from not having had a nap too; maybe that made her fight it more, but it meant that her body was certainly ready to rest! Once she was asleep I laid her on the bed, removed her ears - the left one for the last time ever - kissed her and left. *sigh*...
That was it. Nothing more to do but wait. And eat. Lunch! Great idea, over the road to Subway, 6" meatball, my favourite...now what? Well I figured my night may well be slightly disturbed, so I went back to our room and lay down to try to rest a little before they called to say she was finished. It was right on about 4:30pm when they called, so very close to the 1.5hrs they said it would be, then it was back to the Pre-op room...not entirely sure why. After waiting a while, and watching the nurse go home (!), the surgeon came through to let me know how it had all gone. Beautifully, apparently, no problems, oh and by the way here's the pack of manuals etc. that comes with the device, time to go wait in the Parent Lounge til they call you through to recovery.
Found the Parent Lounge...and I'm a sticky-beak, so i open up the pack of manuals. Warranty, Important Information, Surgeon's Guide...pardon?!? Yep, a step-by-step surgeon's guide on how to perform cochlear implant surgery, including special considerations for children. Great, that's what I need right now! "Drill these holes with a 2mm diamond burr" sure, right, a bit of light reading for later... Not much else useful in the pack, put that away...and wait.
Well, I was the last one in the Lounge and the first one out! About 5pm the anaesthetist came to collect me and took me around to Recovery...and there's Jonica, all bandaged, lying very still, trying very hard not to be awake.
Once they were happy with her (not entirely sure what they look for, stable vitals I suppose? Consistent heartbeat and good O2 saturation?) we were taken back up to the ward, where it was nearly the end of dinner time. I quickly grabbed Jonica some dinner before they packed it all away, and she gladly ate some fish and chips...but sadly her tummy didn't think that was such a good idea after a General Anaesthetic, so it eventually all returned :-( She was in slow motion that evening, everything was about half its usual speed, and she was attached to a drip for fluids and antibiotics which made getting to the bathroom slightly tricky! She was very good though, and made her move in plenty of time every time - no mess! About 7:30pm she decided it was bed time, and I heartily agreed. Sadly, the little girl in the bed next to us didn't agree, and fought sleep somewhat noisily until about 10pm. I was able to get some work done, but was concerned for a while that I might not be able to get to sleep! I was glad when she finally dropped off.
We had a pretty good night, Jonica was woken for medication around 11pm but went back to sleep easily and slept through til nearly 7am. Breakfast was enjoyed and stayed where it was put, and everything was back to normal speed - fast! Our surgeon visited about 7:30am to remove the large bandage, and was pleased with the wound behind her ear. Jonica enjoyed the colouring book the Radio Lollipop people had left for her the night before, and then settled in for more TV. I don't like to let our kids watch too much TV, but i didn't really want her running around straight after surgery either, so had to make a concession...
About 8:30am we were taken over to the Adult hospital for a check x-ray. They like to check the position of the implant before letting us go home so that they're sure it's in the right place. Jonica was very unsure of the x-ray as the last few procedures she'd experienced had involved anaesthetic and discomfort, and she wasn't buying the "it won't hurt" story. Funny, cos I had tried to be very real with her about both the teeth and the ears, making it clear that she would have a sore head for a few days after getting her implant but that we'd give her medicine to help it feel better. I tried very hard not to sugar-coat anything so that she knew she could trust what I said, but she still didn't believe me when I said this would be quick and wouldn't hurt. Fortunately I was allowed to stay right beside her and hold her hands, so I finally got her to lie down under much protest and the image was taken quicker than you can say Jack Rabbit. We were waiting to be taken back to the ward by 9am!
Incredible technology. X-ray taken digitally, sent (emailed, I guess?) to our surgeon who could look at it on his computer wherever he was, decide if it was ok, then give us the all-clear to go home. That came through about 10am i think, but we just had to wait a little longer to have the last rounds of medication (antibiotics and anti-nausea). Daddy came and picked us up about 12pm, so about 25hrs later we were headed home. Jonica had really started to sag by then, so fell asleep in the car.
So, despite the initial bouts of vomiting immediately after surgery, she's had no real ill-effects. There have been no major balance problems, just the occasional misstep; we had to keep her head dry til Friday so that the wound didn't get wet; alternating Panadol and Nurofen for a while to manage pain and swelling, but otherwise a smooth ride. No more MRI's (unless the magnet is removed first), no going through the large airport scanners, and she may set off the anti-theft devices in shopping centres...
Everyone wants to know if she can hear better. Well, we have to wait and see. The surgery was to place the internal part, the receiver and electrodes, we now have to wait for the swelling to go down before we receive the external part, the sound processor. That's the bit with all the smarts in it, the bit that makes the whole thing work...the bit which will tell us if she can hear better. It will take a while for her to adjust to the different sound and for her left ear to "learn to listen" again since the implant sound is not natural sound, but simply switching it on will be the first step. And then a whole new journey begins!
Post-op appt scheduled for Tues 19th Aug, but I'll deal with that in another post...
If you've been reading this recently, you'll know that Jonica was due to have surgery on Mon 11th August to receive a cochlear impact in her left ear. It happened, it all went ahead, it's just taken me a while to get around to writing about it, but I want to do it while it's all relatively fresh in my head. She was very excited about receiving the implant - until it was actually time to go to surgery - and spent most of the 2-3wks prior asking for it, or asking when she was going to get it, or saying she needed it!
So finally Mon 11th August arrived. Daddy took the boys to school, I quickly packed our bags, my dear friend mc dropped in for a quick chat and then, before we knew it, it was time to go. We arrived at the hospital about 10:45am, Daddy dropped us off, and we found our way to the Children's admission desk. We checked in and they took us to our bed, which was in a room shared with two others. Jonica had to fast from the previous night, which meant i did too, so I had to politely decline when they came round offering lunch...*sniff*...
Her surgery was scheduled for 2:30pm, so I didn't bother making her have a nap - figured she was going to get one anyway! Thankfully each bed has a TV, so we switched on ABC4Kids and she was set. The anaesthetist came around to do her final checks, and then it was just a waiting game.
They did come and get us at 2:30, so thankfully we didn't have a long, drawn-out wait. Down to the Pre-op room, which was decorated amazingly (see photo!), where we had a quick visit from the surgeon who marked which side they were doing with an arrow and his initials - just to make sure! Lots of toys for the kids to play with so there was little stress involved, which was lovely. Then, about 2:50pm, time for the anaesthetic...
Unfortunately, last week's experience in Toowoomba was still fresh in Jonica's mind. She had not been allowed to sit on Daddy then, she had been asleep on pre-medication and woke up on the way to theatre so was somewhat disoriented, which made for an unpleasant experience. She was not at all keen to repeat this experience, so despite being allowed to sit on me and sing songs, there was no way she was letting that mask anywhere near her face. Our anaesthetist was fantastic, spoke to Jonica entirely appropriately for such a little girl, and finally improvised using her own hand to get enough gas into Jonica to at least get her drowsy before bringing in the mask to get her off to sleep. Jonica was already tired from not having had a nap too; maybe that made her fight it more, but it meant that her body was certainly ready to rest! Once she was asleep I laid her on the bed, removed her ears - the left one for the last time ever - kissed her and left. *sigh*...
That was it. Nothing more to do but wait. And eat. Lunch! Great idea, over the road to Subway, 6" meatball, my favourite...now what? Well I figured my night may well be slightly disturbed, so I went back to our room and lay down to try to rest a little before they called to say she was finished. It was right on about 4:30pm when they called, so very close to the 1.5hrs they said it would be, then it was back to the Pre-op room...not entirely sure why. After waiting a while, and watching the nurse go home (!), the surgeon came through to let me know how it had all gone. Beautifully, apparently, no problems, oh and by the way here's the pack of manuals etc. that comes with the device, time to go wait in the Parent Lounge til they call you through to recovery.
Found the Parent Lounge...and I'm a sticky-beak, so i open up the pack of manuals. Warranty, Important Information, Surgeon's Guide...pardon?!? Yep, a step-by-step surgeon's guide on how to perform cochlear implant surgery, including special considerations for children. Great, that's what I need right now! "Drill these holes with a 2mm diamond burr" sure, right, a bit of light reading for later... Not much else useful in the pack, put that away...and wait.
Well, I was the last one in the Lounge and the first one out! About 5pm the anaesthetist came to collect me and took me around to Recovery...and there's Jonica, all bandaged, lying very still, trying very hard not to be awake.
Once they were happy with her (not entirely sure what they look for, stable vitals I suppose? Consistent heartbeat and good O2 saturation?) we were taken back up to the ward, where it was nearly the end of dinner time. I quickly grabbed Jonica some dinner before they packed it all away, and she gladly ate some fish and chips...but sadly her tummy didn't think that was such a good idea after a General Anaesthetic, so it eventually all returned :-( She was in slow motion that evening, everything was about half its usual speed, and she was attached to a drip for fluids and antibiotics which made getting to the bathroom slightly tricky! She was very good though, and made her move in plenty of time every time - no mess! About 7:30pm she decided it was bed time, and I heartily agreed. Sadly, the little girl in the bed next to us didn't agree, and fought sleep somewhat noisily until about 10pm. I was able to get some work done, but was concerned for a while that I might not be able to get to sleep! I was glad when she finally dropped off.
We had a pretty good night, Jonica was woken for medication around 11pm but went back to sleep easily and slept through til nearly 7am. Breakfast was enjoyed and stayed where it was put, and everything was back to normal speed - fast! Our surgeon visited about 7:30am to remove the large bandage, and was pleased with the wound behind her ear. Jonica enjoyed the colouring book the Radio Lollipop people had left for her the night before, and then settled in for more TV. I don't like to let our kids watch too much TV, but i didn't really want her running around straight after surgery either, so had to make a concession...
About 8:30am we were taken over to the Adult hospital for a check x-ray. They like to check the position of the implant before letting us go home so that they're sure it's in the right place. Jonica was very unsure of the x-ray as the last few procedures she'd experienced had involved anaesthetic and discomfort, and she wasn't buying the "it won't hurt" story. Funny, cos I had tried to be very real with her about both the teeth and the ears, making it clear that she would have a sore head for a few days after getting her implant but that we'd give her medicine to help it feel better. I tried very hard not to sugar-coat anything so that she knew she could trust what I said, but she still didn't believe me when I said this would be quick and wouldn't hurt. Fortunately I was allowed to stay right beside her and hold her hands, so I finally got her to lie down under much protest and the image was taken quicker than you can say Jack Rabbit. We were waiting to be taken back to the ward by 9am!Incredible technology. X-ray taken digitally, sent (emailed, I guess?) to our surgeon who could look at it on his computer wherever he was, decide if it was ok, then give us the all-clear to go home. That came through about 10am i think, but we just had to wait a little longer to have the last rounds of medication (antibiotics and anti-nausea). Daddy came and picked us up about 12pm, so about 25hrs later we were headed home. Jonica had really started to sag by then, so fell asleep in the car.
So, despite the initial bouts of vomiting immediately after surgery, she's had no real ill-effects. There have been no major balance problems, just the occasional misstep; we had to keep her head dry til Friday so that the wound didn't get wet; alternating Panadol and Nurofen for a while to manage pain and swelling, but otherwise a smooth ride. No more MRI's (unless the magnet is removed first), no going through the large airport scanners, and she may set off the anti-theft devices in shopping centres...
Everyone wants to know if she can hear better. Well, we have to wait and see. The surgery was to place the internal part, the receiver and electrodes, we now have to wait for the swelling to go down before we receive the external part, the sound processor. That's the bit with all the smarts in it, the bit that makes the whole thing work...the bit which will tell us if she can hear better. It will take a while for her to adjust to the different sound and for her left ear to "learn to listen" again since the implant sound is not natural sound, but simply switching it on will be the first step. And then a whole new journey begins!
Post-op appt scheduled for Tues 19th Aug, but I'll deal with that in another post...
Tuesday, August 5, 2014
One down, one to go!
The teeth are done! After an eventful trip to Toowoomba last night, Jonica was admitted to hospital at 6:30 this morning and went into theatre at about 8:50am. Like her mother, apparently she went to sleep on the pre-medication but woke slightly when transferring to theatre, which unfortunately caused some stress. Once asleep, though, the surgery apparently went exactly as planned and she came out to recovery around 10am.
Despite her valiant efforts to stay awake after surgery, sleep overcame her for sometime afterwards...
...but finally, after some jelly and custard, she was discharged and came home. After dozing on and off in the car, she fell into bed once home and slept for nearly 2hrs. We managed to get her up for a small dinner and a bath, then it was straight back to bed. Let's see how she pulls up tomorrow...
Next appt: Mon 11th Aug, Implant surgery
Monday, August 4, 2014
And so begins the rest of our lives...
Mon 4th Aug - How can so many things happen at the same time? Today is my sister's birthday, my friend's son's birthday, and another friend's birthday; tomorrow Jonica has her teeth crowned and my parents leave on their 5wk Canadian holiday. Doesn't sound like that much when you write it down, but it adds up to a lot of emotion!
This afternoon Daddy and Jonica left on their adventure to Toowoomba. They're staying overnight tonight because surgery is early tomorrow morning (apparently she's second on the list) so they need to be at the hospital at 6:30am, and we thought it would be better to already be in T'ba rather than leaving home at 4:30am! Apparently she's vomited in the motel room tonight, more likely a consequence of being too full than of anything else, but still not so fun for everyone. Hospital says to come in as planned anyway and see what the anaesthetist says in the morning. Great, just what we needed, a spanner in the works. Hopefully she'll sleep ok the rest of the night and all will be well for tomorrow...
Stay tuned for more updates, I'll try to post as things happen, every few days.
Thursday, July 31, 2014
August is always busy...
Today is the 31st of July, which means that tomorrow is August. If there's one rule I've learned in life, it's that August is always busy. Always! About a month ago I remember looking through my calendar for August and noticing how empty it was. "But August is always busy," I told myself. "I wonder what will fill it this year?"
I feel like we're standing on precipice, on the very edge of an amazing, exciting journey. There's anticipation, excitement, trepidation, some fear of the unknown, just as there is with any journey. For us this is of course not so much a locational journey as an educational one. We're about to enter the unknown, through a curtain and into a new room, walking in places we have not yet explored. It's daunting, overwhelming, but exciting and filled with wonder and mystery. What will it be like? What will she be like?
Ask me when August's over...
I feel like we're standing on precipice, on the very edge of an amazing, exciting journey. There's anticipation, excitement, trepidation, some fear of the unknown, just as there is with any journey. For us this is of course not so much a locational journey as an educational one. We're about to enter the unknown, through a curtain and into a new room, walking in places we have not yet explored. It's daunting, overwhelming, but exciting and filled with wonder and mystery. What will it be like? What will she be like?
Ask me when August's over...
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