Thursday, March 20, 2008

Confirmation

Ok so after waiting that agonising 4 weeks it was off for a hearing test at Australian Hearing. Remember the dog barking incident? Based on that experience, we were pretty convinced we were dealing with a hearing loss!




So off we went with our beloved 2 year old to find out just what was going on. Have you ever seen them test a 2 year old for hearing loss? It is usually done as behavioural testing. The whole gang (audiologist included) file into this large room that is actually a sound proof booth. In it she has a table and a computer and a range of other gadgets used to test hearing. On one side of the booth there is like a smaller column booth where someone outside can access that column. The person outside is armed with a puppet and a switch to turn on a light inside the column.


Ok still with me? So the idea is you distract the child being tested with toys and games on the table. Then when there is a sound being made by the testing gear, the puppet appears in the column and a coloured light lights up the column. Sooo of course the young child needs to associate that when I hear a sound, the puppet will be there. It is supposed to make the child look for the puppet when they hear the sound. Easy enough eh? Well yeah except you as the parents can't look when you hear the sound because then your very smart little pint size will just follow your eyes to find the puppet without so much as hearing a peep.


The test begins, we play with A and distract him. The first couple of times a sound is made we direct his attention to the puppet so he knows that something is going on there. But you see here is the catch! When you can hear two tenths of bugger all and you don't know that there is a sound, and that the sound is your cue to look for the puppet, how in the hell do you know when to look? Short answer is you don't! So you just look over every now and then at random times to see if the puppet is there.


The test continues, it is clear A has no clue what is expected of him and equally clear he is hearing bugger all. And so we increase the volume of the sounds he is supposed to be listening out for. Oh my god, how loud are these sounds, it feels like I am at rock concert with my organs vibrating and the bones in my hear tap dancing on the sound vibrations - but my gorgeous little A, no reaction, nothing - nadda. After testing at a number of different volumes, and a number of different pitches, the story is the same. A is not reacting to any sounds, clearly he can not hear them and so also can not get the gist of the behaviour conditioning of when the puppet will be there.


Well we had prepared ourselves for that right? We knew from the dog barking incident he wasn't hearing right? So we were expecting this to be the case, right?


WRONG!


Of course we had all the logical reasoning and arguments going around in our head before this appointment. Logic doesn't come into it though really when it is your child, the one entrusted in to your care, the one you love more than life itself. No matter how rational and logical you are in real life, you can't help but cling to the hope that it is all a bad dream and you are going to go to that test and see that your child hears just fine and that the nightmare is finally over.


Of course it wasn't. The audiologist used words like "profoundly deaf", "hearing aids" and a whole lot of other stuff that I just don't recall. I tried so hard to listen to take it all in, but the words just washed over me. I wasn't in my body listening to all this information I need to know. I was numb, I was out of my body watching this happen to someone else, to someone else's child. It wasn't real, it wasn't happening - but of course it was. There was the numbness and then there was that feeling like someone had just stabbed me through the heart. This poor little boy had fought to hard to survive meningitis and survive it he did - only to be kicked when he was down and for us to discover he was left with a profound hearing loss. Why did we now have to deal with this? Hadn't we been through enough? Hadn't this gorgeous little boy with the mischevious smile suffered enough already? I don't really remember how we all got home from that appointment, it was a blur of numbness, emptiness and desolation caused by such a feeling of loss.


One thing I did recall hearing was that in order to get hearing aids fitted we needed a referral from an ear, nose and throat specialist (ENT). Of course it wasn't like we already had one of them was it? No need for us and our suburbianly normal family life. There was also a mention of a cochlear implant and that A would be an excellent candidate because he had "normal hearing" prior to meningitis. I clung to those words without really understanding what it all meant.


Lucky for us our paediatrician was truly an angel that walks on Earth and he squeezed us in for an appointment pronto. I thought no-one could have been as upset by the diagnosis of A's hearing loss as we were, but you know the paediatrican damn near was. He kept saying things like "we did the best we could do, we gave him steroids to reduce the inflammation of his brain, we managed to stop the brain swelling, he didn't even have any seizures"....he too was gutted that after all the collective efforts to save this little boy, we hadn't managed to save his hearing.


Our paedatrician would give us a referral to an ENT. We asked about this cochlear implant thing. He was a little vague not really knowing exactly what outcome A might get from one and "in any case the waiting list is like 2 years to get one"


What the hell did you just say?


In the time since meningitis I had heard what speech A did have go from being clear two year old speech, to a very slushy sounding speech that was becoming harder and harder to understand. And that was in like a month or so and now you want me to wait 2 years to give him something that might help him hear again????? I think not people!!! Clearly the paediatrician did not have any more information to give me on this one so I would have to wait to find out more.


The ENT we were referred to actually was the paediatric cochlear implant surgeon for our state. I remember calling his rooms to seek an appointment and his receptionist was adamant that there wasn't an available appointment for another 3 months taking us well into next year...by this time we were about halfway into December.


It is funny when you look back in hindsight, what is it that makes you add in some extra information, that at the time really seems insignifcant to you but in the situation you are in makes the most amazing difference, even though you don't know it? I told this lovely lady that I needed to see the ENT because I needed to get hearing aids for my son so that he could hear again. Meningitis had stolen his hearing and I had to do something to at least try to get it back.


Next thing I knew I was on hold and she was speaking to the doctor. In a flash she came back with an appointment for a couple of days later, would be available? Hell yes, ain't no where else that was more important that we needed to be!


At that appointment we met the most amazing man. This was a surgeon soooo before his time. Before people wrote text books and ran courses on bedside manner, on treating the whole family, on making sure family members had all the information they needed in order to make informed decisions - this guy was so ahead of the game he was already doing it.


I remember writing the address down, it was in a fancy part of town - hmmm megabucks doctor I thought to myself. Well I don't think I could have been any more wrong. We arrived at the surgery to see an old 70's style reception desk and older filing cabinets stuffed to overflowing. The furniture in the waiting room was comfortable enough but its style gave away its age and the years of love it had already had.


Finally we were called and in we went to meet this most amazing man. We were to learn a lot about meningitis that day. You see meningitis attacks the little cells in the cochlea, called hair cells. You see hearing is a pretty complex, pretty amazing process. For more information about how our hearing works check out this site!



So A's hair cells had been trashed by the meningitis. That meant no matter how loud the sound was or how much we amplified it with hearing aids, the hair cells weren't going to transmit that message to the auditory nerve of the brain. Another big nastie with meningitis is that the fluid in the cochlear that is usually very water-like is also effected by meningitis. Meningitis makes this fluid change to the consistency of toothpaste and then ultimately a hard bone like subtance.


Given that a cochlear implant goes right into this area, there is a need to get it in there before this happens. This hardening process can take years for some patients but only months for others so we were not going to be waiting around. It was now clear to me why we had jumped the appointment queue. I had mentioned the word meningitis to the receptionist when I called, lady luck and fate were surely smiling on us that day.


Are you one of those folks that complains about the cost of health insurance and how you are sure it owes you more than it has given you? Well we used to think that too! At our visit to the ENT we discovered that a number of cochlear implant surgeries are covered by government each year but the year that A needed it, they had already been allocated. It was possible to try to get funding from a charity like Variety for urgent cases like A if need be, but we were blessed to have private health insurance to cover the lot. At that point in time it was such a godsend, we just had to worry about our beautiful baby boy, not how the heck we were going to pay for his implant and associated surgery costs.


Before any of that though we needed to confirm the level of his hearing loss. This was to be done by Automated Auditory Brainstem Response (AABR). The key to this test is that the child needs to be sleeping. In the case of newborns a good feed and into a settled sleep will do fine, but not so for the 2 year old toddler with attitude.


Ah no for that we have a drug for sedating them so that we can test them. Any parent who has had their child sedated for this test will tell you it is a living nightmare actually getting them to the sedated part. The drug does ultimately sedate them and off to the land of Z they go, but not before turning your world and everything in the immediate area upside down!


They want to get off the bed - ah no, you might fall and hurt yourself.

They whine and grizzle to be cuddled - only to smack your loving arms away and if they are really good, sideways slapping you in the face in the process.


And so it goes on, this continual battle of wills until they finally collapse into sleep. BUT of course this is different for every child so you really don't know just what side of the lottery you are on until you take on the challenge. I can't remember the exact time but I reckon we went close to an hour, and after all that he slept for maybe 20 minutes - 20 minutes!!!! Yep that was it but fortunately it was enough to complete the test.


The test comprises putting a kind of shower cap on their little heads with sensors that touch different parts of their little heads. A set of headphones are put on their ears and sounds sent through the headphones. At first a baseline brainwave pattern is determined in the absence of any sound. Once a baseline has been established a series of sounds are pumped through the headphones and brain wave pattern recorded. Clearly when a child hears a sound they register that sound and that can be seen as a change in the brain wave pattern. We kind of knew a bit about it at that time, not as much as we know now, but we knew enough to know that we should have been seeing something but we weren't. I'm not sure you would call it "flatline!" like the doctors shout when the patient's heart stops and the ECG flatlines, but it was flat enough that we knew this test was just confirming what we already knew - this poor little bugger could hear jack shit!


Back to the ENT we went, yes this had confirmed his level of loss. Realistically he was unlikely to gain any real benefit from hearing aids and if and when his cochleas ossified (turned into that boney substances) hearing aids would be useless. Total no-brainer for us his parents - whatever was the best option for this little boy to hear again, we were on it, where do we sign! If his implant didn't work, we would have lost nothing, but just suppose, what if, what if it actually did work????


By this time Christmas was rapidly closing in and after several months of appointments and the crazy life of two kids under 3 years old, C and and I were starting to run out of steam. I was thinking to myself, yay last appoinment til Christmas at least then we could catch our breath.


Well so I thought!


We needed a CT scan of A's inner ear to make sure there was no unknown malformations that may impact on his implantation or in the decision of which ear to implant. At that time only one ear was implanted, partly because of cost, partly because outcomes were not so well researched, and there was a thought to preserve the other ear for future technology. Now children who have had meningitis are routinely implanted with both sides at the same time in that early surgery.


So it was another day stay at the hospital for a CT scan however we did manage to avoid the sedative from hell. For this they put them under a light general. I was able to carry A into the room and hold him as the anaesthetist put him under for his CT.


One final pre-Christmas appointment with the ENT to go!! Everything was looking good, and A was scheduled for his surgery on January 25th, the day after Australia Day.


At that last appointment, his ENT showed me just why we were in the presence of the most truly, amazing human being and surgeon. He had explained to us the need to move quickly on A's surgery but he also felt a sense that he was rushing us and he wanted to make sure that we were totally at ease with our decision for A to have implant surgery.


He was holidaying interstate over Christmas but was most concerned that we should not be out of touch with him during this time. He gave us his mobile phone number with the words "Any question you have as A's parents is not a silly questions but rather a question that needs to be answered. Ring me anytime over the break if you need to ask me anything, I want you to have all the answers you need to be comfortable with this. If at any point you are not comfortable you say STOP and we will stop. And that is right up until we wheel him into surgery, at any point up til then you can say STOP and we will stop".


Can you believe that? How many surgeons give you their mobile number and tell you to call them while they are on a family holiday? How many surgeons truly empower the parents that this is their decision for their child and at any point they are able to change their mind about that decision? Like I said a total ace in the pack, this ENT. I would later learn that this was just the tip of the iceberg with this particular ENT and his generosity of spirit.


By now I think it was about the 23rd of December and we were totally exhausted. We had a host of appointments after New Years with service providers, including getting hearing aids to trial for the time leading up to surgery.


However for now, we needed some down time. We needed some time just to be together, to reconnect as a family. This was so true for B who had to be baby sat so C and I could go to the appointments together to support each other through this process. It would be our first Christmas together with A not hearing, and also our last Christmas together with A not hearing (well he would be hearing with his cochlear implant by the time the next Christmas rolled around!).


3 comments:

Jodi Cutler Del Dottore said...

Naomi,
This post definitely brought back memories of booth testing nightmares. In Florence, they used to make us wait two hours before the doctor would take us, you can only imagine how well my hyper 12 month old handled the testing procedure at that point and how sweaty and smelly I was. We have been so incredibly lucky with our pediatrician and surgeon as well...Keep going. Hugs to all, Jodi

Naomi said...

thanks Jodi! By the way loved your music on your most recent blog, that song is my theme song you know : - )

Kath Lockett said...

What a complicated process made triply difficult by the patient being a two year old!