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

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 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...

Tuesday, July 29, 2014

The diary is filling up...

So today I made 3 more appointments, all for September! Argh! OK, so i knew it would be like this, but walking it out is another thing altogether! My coping strategy is to rehearse the schedule in my head in the weeks leading up to it all, so at the moment my head contains this much:

This week - normal week, dinner with Keith's Mum on Friday, catch up with my parents sometime over the weekend.

Next week - Monday is my sister's birthday. Keith & Jonica go to Toowoomba for her teeth on Monday, come home Tuesday, so i have boys on my own monday night but some kid-free time on Tuesday (yay!). My parents also leave on a 4wk holiday on Tuesday. See how Jonica goes re:Kindy on Wed & Thurs. Work Wed & Thurs. Catch up with friends on Sat.

The next week - IMPLANT SURGERY Monday, stay overnight, home Tuesday, Ekka holiday Wednesday, see how she goes for Thurs as to whether or not she goes to Kindy / I go to work. Jarrah has a school excursion on Friday.

The next week - Kaelen has a school excursion on Tuesday, the same day as Jonica's post-op appointment. Visit MOPS on Wed, work Thurs.

The next week - String Festival at work Mon & Tues afternoons. Work Wed & Thurs. That's enough for now

The next week - Tues 2nd Sept SWITCH-ON! We get to find out what Jonica thinks of the sound she gets from her implant... Work Wed & Thurs. My parents arrive back home.

The next week - CI Mapping appt Tues, work Wed & Thurs.

The next week - work Wed & Thurs, last week of school term

The next week - CI Mapping appt & Aus Hearing appt for Jonica

The next week - Jonica turns 4!

And that's about where my mental calendar ends right now...but i think that's enough! I got the call about the switch-on date today, as well as the next two mapping appts, and I know that speech therapy will kick in pretty soon after all that, but that can wait. For now I just keep going over the next two weeks, who's going to be where, who's taking whom where and when, in the hope that when it comes to it I won't forget anything! And also that it helps me take it in my stride and not be overwhelmed by it all. That's the plan!

Next appt: Dental surgery @ Toowoomba, Tuesday 5th August. That's next week!

Saturday, July 26, 2014

I hate fluctuating hearing loss...can I just make that clear?

Yep, let's get it out there right now. Fluctuating hearing loss sucks. Not sure which is worse, fluctuating hearing or deteriorating hearing. They *both* suck! You can just never tell from one day to the next what you're dealing with! And this makes raising kids rather tricky, as if it wasn't tricky already...

So Friday morning, I decided to test Jonica's Ling sounds again, just like Thursday. Hearing aids in, I stood in the same place...and she detected everything! Which is good, it means she's probably hearing pretty well, and certainly better than Thursday, but I just wish it would decide to be somewhere and jolly stay there! Through the morning it became clear that she was hearing almost "normally" - normally for her, as of Wednesday morning - although there were still a couple of times she missed things that I would have expected her to get.

So, what to do? I decided to take her to the retail chain anyway, just in case something showed up that I should do something about. My beautiful friend mc accompanied us. I had asked her to come on Thurs as I wasn't sure how I was going to handle another large drop with everything else going on, but given the fact that Jonica's hearing seemed to have recovered I now wasn't expecting any huge surprises. The people at the retail store were wonderful, very helpful and took our situation in their stride. Sadly their test only went to about 80dB, but that was enough to show us that there was perhaps a small change in the 1kHz region, but nothing that warranted panic. *Phew!*

Today was even better. Well, Jonica was a bit unwell today, ran a slight temperature most of the day, but she seemed to be hearing very well. Even in the evening when her temp was highest, Daddy and I both noticed she was hearing well, I'd say back to Wednesday morning levels. Good!

So, I've notified Aus Hearing just so they know, and I plan to inform our implant surgeon on Monday, just so everyone knows what's going on. As I've said before, 2 bad days every 2 years or so I can cope with, but if it starts to be 2 bad days every 2 months...? How bad do we let this get before we take more drastic measures? There are no easy answers, of course...which is why we just take one step at a time, and just do the next thing...