A surgical operation that open up the head (above and behind the ear), drills a small seat in the skull, makes a hole through the skull into the cochlea and then closes it all up. When the doctor tells you there is minimal surgical risk with such an operation, it is hard to accept it at face value.
Our preparation for the surgery started with making the decision on a date, followed by an attempt to understand the exact procedure of the operation. Choosing to bilateral CIs for NI, only added to the risk and complexity of the operation. Must say that Dr. RV was totally informative and reassuring to us - and helped us prepare mentally by relating to examples of other operations he had done. What also helped was talking to my schoolmate, Vishal - about the operation his son had gone through and as we were preparing, was getting ready to go through the sequential bilateral on the other ear.
Getting the funding organized was the other big challenge. Between our own savings, the insurance and borrowing - we had to figure out how to completely cover the operation. The insurance bit wasn't clear - in the sense that I wasn't sure if I would get the complete cover - because the insurance company left it grey in the pre-approval note, since they approved only a part of the amount and mentioning that the rest would be decided upon on the receipt of expenses from the Hospital. They eventually did provide the full coverage, which still worked out to a little over 18% of the total expenses. Looking back, my company who provided the coverage with the medical insurance policy, backed me pretty well in this case and as i found out later, took up this issue with the insurance provider to provide employees with the option to choose higher coverage by paying extra. Thanks to my boss, AP, to take this up and make a difference.
Thankfully, Dr. RV also got us a line of credit with the CI company to pay for one CI over a period of 4-6 months. This helped a lot, because it put less pressure on raising funds in the immediate term. To give you an idea about the money we needed, it cost us about Rs.10L per CI (one ear), inclusive of the operation and hospital expenses. What was an amazing gesture, my team and specifically my boss, helped to raise some money and pulled together a good 12% of the funds - and what do I say, when every penny counts - something like this not only provides comfort but also reassures one and cements the faith in goodwill and notion of paying it back. So overall - we pulled it through with a combination of savings, family, friends (read my team/office), insurance cover and credit. Money isn't the primary thing in an operation - but it is necessary. I am sure everyone who has been through something like this understands.
Back to NI, he still had no clue what was going to happen. We were more concerned about how he (still under 2 years of age) would take all of this in. How will he fare throught the operation and will he be the same again after the operation. What a bubbly and active baby he is, I definitely don't want him to lose that part of his nature. Well, for now - it was just doing the right thing, and what we felt was the best for him - the rest is of course, upto God and destiny. Yes - I believe in destiny - but I also believe that we have got to set it up for ourselves by putting in the effort.
Clinically, the operation was relatively simple. We had to register the day before, run a few tests and procedures for NI and the operation itself would take 3-4 hour per ear and we would need to stay in for about 5-6 days to let the wound heal and to make sure there is no infection. I can write through a lot more about our hospital stay - but want to cut it short and just say that taking a child (more an infant) through an operation is really awkward - because you can't feel the chill in your bone, but you really want to - because he can't speak for himself. Also every time, the nursing staff had to poke him with needles for blood and stuff - I had to hold him tight and let him cry out - and that was the toughest thing I as a parent had to go through. Why should I let my son suffer pain - what will he be thinking as I hold him and don't protect him from this pain. Well all these thoughts drain out, as I focus on just looking into him and pacifying him.
NI is a brave boy. He cries when he is poked, but as we leave the nursing room - he is ok and starts looking around for his next play. My son - you are braver than I ever have been. And this just tells me you are going to accomplish so much more in your life. We are going to help you in every way we can. This surgery is a necessary investment - in our mind, toward making you independent - because we know if you are independent, you have the capability to do anything. That is right - I feel and believe you will represent the best in both of us, your mom and I.
Next: Between the surgery and activation (Happy Birthday)
Monday, October 10, 2011
Sunday, July 24, 2011
Choices - Bilateral, Device, Timing
Getting back to our friendly surgeon with the MRI and CT Scan reports, my concern and hope was that NI should be a good candidate for CIs - so he could really benefit from the solution. The Doctor confirmed this, and that was a relief.
Now the next step was to really make some choices of how we wanted to get the CI done. Among other things, we had to first figure out if we wanted to do unilateral or bilateral implants (one side or both sides), decide which device we wanted to get (costs ranging from Rs. 5 to 10 lakhs per device) and perhaps most importantly, when we want to get the implants done. The surgeon's opinion was that we do the implants asap, given that Ni was still just going to turn 2 - which was an ideal age (or just about there - my research on the internet informed that 18 months was the ideal age for children to start listening and picking up language).
So we had to act and decided quickly. We decided to get back to Mumbai and think over it in a week's time. Given the developments, and the perspective we had - it was pretty clear that we had to get the implant done - that seemed to be the only real solution. One of the factors was also the experience that an old school buddy of mine shared. I just bumped into him at the Ahmedabad audiologist (Shabd Brahma) - and figured his son had also got a CI. He shared that they tried a lot of other things (native and modern medicine methods) - but finally came to choose CI, since it was the best option.
Also, in the little research that we could do over the week - we realized how much this procedure had developed in the last 30 years and that CIs today were pretty good and we could read some really good stories of children who could have a pretty normal and great life with them. In the meantime we also explored a couple of opinions from down South, specifically from Chennai - where we learnt that there was a Dr. Mohan Kameswaran , who ran a very successful ENT center (MERF), specializing in CI surgeries. We could manage to speak to Dr. Kameswaran - and he clearly wanted to see the child before he could suggest anything. This was going to be a stretch since travelling to Chennai with NI just for an appointment with the Doctor, with probably the same outcome - didn't seem so appealing. But the parallel thought always is that its good to get a second opinion and understand the recommendation in detail for us to make the most informed choice. The additional money spent in making the visit would just work into the entire cost of getting the best treatment for NI. Anyway, I guess once you make a choice about such things, it is best to back it and go down the path fully.
The choice between unilateral or bilateral was simpler in the scheme of things. Not easy though. Pros were that NI would have to go through surgery just once, and he would have the benefit of sound localisation and input to both ears right from the start. We would anyways have to do the second ear pretty quickly (like within 1-2 years) if we wanted to get it done. Cons were that he was going to have to wear the aid on both sides, bear greater surgical risk (though it was minimal - but as parents you always feel its a risk) and of course, it was going to cost us a fair bit more at one shot. I guess as any set of parents, money was the least of our concern. We decided to go with bilateral implants so we could really offer NI the best opportunity to pick up listening. A lot of course still depended on the therapy we could get him and our own effort.
From a timing standpoint, once we knew we had to do it - we just wanted to do it asap. So we settled for an end-April date - to be precise, Friday the 29th of April. So we got back to the surgeon (Dr. RV) and wanted to figure out exactly the expense, the process for the surgery and the rehabilitation. NI was still completely oblivious of what was going to happen - he was his usual hyper-active self. SO much so, that we had 4-feet fall at a temple (Chinmaya Mission, Powai) we visited with a huge bump on his forehead. THat incident shook me, because for the first 5 seconds, NI seemed to not be able to move his hand - perhaps from the shock of the fall. In any case, our prayers had started to be more intense and here on, we just needed to really keep a cool head and appear strong to each other even if we really didn't feel that way.
This was hard. Its easier said than done. But NI, we are just determined to get you to have a good and happy life. If you ever wonder why life is tough, just remember us and that all we want for you is to feel beautiful and happy. The rest is just a part of the journey.
lots of love and prayers,
SI
Next: Preparing for the CI surgery.
Now the next step was to really make some choices of how we wanted to get the CI done. Among other things, we had to first figure out if we wanted to do unilateral or bilateral implants (one side or both sides), decide which device we wanted to get (costs ranging from Rs. 5 to 10 lakhs per device) and perhaps most importantly, when we want to get the implants done. The surgeon's opinion was that we do the implants asap, given that Ni was still just going to turn 2 - which was an ideal age (or just about there - my research on the internet informed that 18 months was the ideal age for children to start listening and picking up language).
So we had to act and decided quickly. We decided to get back to Mumbai and think over it in a week's time. Given the developments, and the perspective we had - it was pretty clear that we had to get the implant done - that seemed to be the only real solution. One of the factors was also the experience that an old school buddy of mine shared. I just bumped into him at the Ahmedabad audiologist (Shabd Brahma) - and figured his son had also got a CI. He shared that they tried a lot of other things (native and modern medicine methods) - but finally came to choose CI, since it was the best option.
Also, in the little research that we could do over the week - we realized how much this procedure had developed in the last 30 years and that CIs today were pretty good and we could read some really good stories of children who could have a pretty normal and great life with them. In the meantime we also explored a couple of opinions from down South, specifically from Chennai - where we learnt that there was a Dr. Mohan Kameswaran , who ran a very successful ENT center (MERF), specializing in CI surgeries. We could manage to speak to Dr. Kameswaran - and he clearly wanted to see the child before he could suggest anything. This was going to be a stretch since travelling to Chennai with NI just for an appointment with the Doctor, with probably the same outcome - didn't seem so appealing. But the parallel thought always is that its good to get a second opinion and understand the recommendation in detail for us to make the most informed choice. The additional money spent in making the visit would just work into the entire cost of getting the best treatment for NI. Anyway, I guess once you make a choice about such things, it is best to back it and go down the path fully.
The choice between unilateral or bilateral was simpler in the scheme of things. Not easy though. Pros were that NI would have to go through surgery just once, and he would have the benefit of sound localisation and input to both ears right from the start. We would anyways have to do the second ear pretty quickly (like within 1-2 years) if we wanted to get it done. Cons were that he was going to have to wear the aid on both sides, bear greater surgical risk (though it was minimal - but as parents you always feel its a risk) and of course, it was going to cost us a fair bit more at one shot. I guess as any set of parents, money was the least of our concern. We decided to go with bilateral implants so we could really offer NI the best opportunity to pick up listening. A lot of course still depended on the therapy we could get him and our own effort.
From a timing standpoint, once we knew we had to do it - we just wanted to do it asap. So we settled for an end-April date - to be precise, Friday the 29th of April. So we got back to the surgeon (Dr. RV) and wanted to figure out exactly the expense, the process for the surgery and the rehabilitation. NI was still completely oblivious of what was going to happen - he was his usual hyper-active self. SO much so, that we had 4-feet fall at a temple (Chinmaya Mission, Powai) we visited with a huge bump on his forehead. THat incident shook me, because for the first 5 seconds, NI seemed to not be able to move his hand - perhaps from the shock of the fall. In any case, our prayers had started to be more intense and here on, we just needed to really keep a cool head and appear strong to each other even if we really didn't feel that way.
This was hard. Its easier said than done. But NI, we are just determined to get you to have a good and happy life. If you ever wonder why life is tough, just remember us and that all we want for you is to feel beautiful and happy. The rest is just a part of the journey.
lots of love and prayers,
SI
Next: Preparing for the CI surgery.
Tuesday, April 26, 2011
From the Audiologist to ENT Specialist
April 3 - April 10.
So we now had a report from the audiologist (they are not doctors but healthcare professionals trained in audiology) which clearly indicated severe to profound hearing impairment for in both ears. What next?
The audiologist (at Hiranandani Hospital) suggested we follow-up the BERA test with an ASSR test, which would tell us specifically at which frequencies he could hear more (or less) and hence provide indications for an appropriate hearing aid.
We quickly googled and read through some information on the Internet - and basically figured that we needed an opinion from an ENT specialist, preferably someone who had experience with sensorineural hearing loss. We also called our Paediatrician in Powai, who referred us to get an appointment with Dr. M Kirtane at Hinduja. Ironically, this doctor had asked us to wait some more time when we had asked about NI's (my son) hearing a few months back. Now, of course, he conveniently asked why we waited for so long - and that we should really focus on getting him help asap. Every 15-days period mattered. So we were a little psyched.
We couldn't get an appointment with Dr. Kirtane (waiting time was over a month), so we instead took an appointment with the other ENT specialist at Hinduja (Dr. Shukla) for Thursday. In parallel, my mom found out about Dr. Rajesh Vishwakarma, the head of ENT at Civil hospital (an ex-student and parent of current student at her school) - and spoke to him. He recommended we come down for a consultation - so we booked tickets to Ahmedabad to meet him on Friday.
At Hinduja, Dr. Shukla examined NI and said he had a bit of fluid in his middle ear. Though he seemed to agree with the BERA test report, he suggested that we first drain the fluid (through a procedure called Myringotomy) and check if there is an improvement in the hearing before considering a cochlear implant. He mentioned that this may not drastically change the test results - but it was better we did this before going further down the path. He convinced us of doing this quickly and we even got a pre-authorization request initiated with the Insurance company and booked the Operation to happen in 10 days. The one thing we were though irritated about was how the Doctor (seemingly a senior guy in the Hospital) and his staff were totally insensitive to having a kid in the room and ward. NI is a very active kid, and he still doesn't know much - so if he is going to make noise and run around a bit (and make one of us run behind him), one would really expect the likes of Doctors and teachers to be a bit more tolerant and sensitive. Keep wondering if there is really a sense of thinking about people as people - and not another customer from whom you want to make money as efficiently as possible.
Anyway, we pretty much gave up on Dr. Shukla's recommendation after we met Dr. Rajesh. He was so much more patient and really explained to us the entire structure of the ear, asked us a few questions to find potential causes, and then walked us through the solution (cochlear implants = CI) and how we would have to go about it. He basically referred us back to the audiologist to do a few more tests to be followed with an MRI and CT scan. While the audiologist tests (BERA, ASSR) would give him a better idea of the hearing impairment, the MRI and CT scan would provide an indication of NI's eligibility to get a CI, based on whether the auditory nerve was fine or not.
Wrap: From diagnosis to understanding causes and potential treatment options - is a very uncertain phase. My takeaway is that it always helps to get more than one independent opinion and preferably speak to a Doctor who is known. Doing this quickly makes sense in my mind, because the sooner you can confirm the diagnosis and causes, the earlier you can start on the path toward treatment.
NI continues to have no clue about this. It was just a little hard for us to sedate him again for the tests (and confirm his hearing impairment) and then again for the MRI and CT Scan. MRI and CT Scan was a bit of a bad experience - with the doctors just shouting at us because they let him sleep for 1 hour after sedation before taking him in for a scan (and he woke up because the untrained attendant lifted him in a bedsheet - seriously > healthcare competencies - we have a long way to go beyond our Medical colleges).
NI - I am determined to whatever it takes to get you the best solution possible.
Next: Cochlear Implant > dealing with the choices and thinking about the money.
So we now had a report from the audiologist (they are not doctors but healthcare professionals trained in audiology) which clearly indicated severe to profound hearing impairment for in both ears. What next?
The audiologist (at Hiranandani Hospital) suggested we follow-up the BERA test with an ASSR test, which would tell us specifically at which frequencies he could hear more (or less) and hence provide indications for an appropriate hearing aid.
We quickly googled and read through some information on the Internet - and basically figured that we needed an opinion from an ENT specialist, preferably someone who had experience with sensorineural hearing loss. We also called our Paediatrician in Powai, who referred us to get an appointment with Dr. M Kirtane at Hinduja. Ironically, this doctor had asked us to wait some more time when we had asked about NI's (my son) hearing a few months back. Now, of course, he conveniently asked why we waited for so long - and that we should really focus on getting him help asap. Every 15-days period mattered. So we were a little psyched.
We couldn't get an appointment with Dr. Kirtane (waiting time was over a month), so we instead took an appointment with the other ENT specialist at Hinduja (Dr. Shukla) for Thursday. In parallel, my mom found out about Dr. Rajesh Vishwakarma, the head of ENT at Civil hospital (an ex-student and parent of current student at her school) - and spoke to him. He recommended we come down for a consultation - so we booked tickets to Ahmedabad to meet him on Friday.
At Hinduja, Dr. Shukla examined NI and said he had a bit of fluid in his middle ear. Though he seemed to agree with the BERA test report, he suggested that we first drain the fluid (through a procedure called Myringotomy) and check if there is an improvement in the hearing before considering a cochlear implant. He mentioned that this may not drastically change the test results - but it was better we did this before going further down the path. He convinced us of doing this quickly and we even got a pre-authorization request initiated with the Insurance company and booked the Operation to happen in 10 days. The one thing we were though irritated about was how the Doctor (seemingly a senior guy in the Hospital) and his staff were totally insensitive to having a kid in the room and ward. NI is a very active kid, and he still doesn't know much - so if he is going to make noise and run around a bit (and make one of us run behind him), one would really expect the likes of Doctors and teachers to be a bit more tolerant and sensitive. Keep wondering if there is really a sense of thinking about people as people - and not another customer from whom you want to make money as efficiently as possible.
Anyway, we pretty much gave up on Dr. Shukla's recommendation after we met Dr. Rajesh. He was so much more patient and really explained to us the entire structure of the ear, asked us a few questions to find potential causes, and then walked us through the solution (cochlear implants = CI) and how we would have to go about it. He basically referred us back to the audiologist to do a few more tests to be followed with an MRI and CT scan. While the audiologist tests (BERA, ASSR) would give him a better idea of the hearing impairment, the MRI and CT scan would provide an indication of NI's eligibility to get a CI, based on whether the auditory nerve was fine or not.
Wrap: From diagnosis to understanding causes and potential treatment options - is a very uncertain phase. My takeaway is that it always helps to get more than one independent opinion and preferably speak to a Doctor who is known. Doing this quickly makes sense in my mind, because the sooner you can confirm the diagnosis and causes, the earlier you can start on the path toward treatment.
NI continues to have no clue about this. It was just a little hard for us to sedate him again for the tests (and confirm his hearing impairment) and then again for the MRI and CT Scan. MRI and CT Scan was a bit of a bad experience - with the doctors just shouting at us because they let him sleep for 1 hour after sedation before taking him in for a scan (and he woke up because the untrained attendant lifted him in a bedsheet - seriously > healthcare competencies - we have a long way to go beyond our Medical colleges).
NI - I am determined to whatever it takes to get you the best solution possible.
Next: Cochlear Implant > dealing with the choices and thinking about the money.
Monday, April 25, 2011
Results from the BERA and the World Cup Final
Saturday - April 2, 2011 > A momentous day for more than a billion Indians even before the match was played. Simply because the final match of the ICC cricket world cup held the dream of a nation of haves and have nots, old and young, fathers and sons, rickshaw-walas and car-walas, desis and NRIs - a dream to win the world cup again. And India did win - thanks to our heroes (who will be so for a long time to come) include MSD, SRT and YS.
Saturday - April 2, 2011 > Like any other Saturday, we woke up thinking about the weekend - how could we possibly make it more interesting than the usual boring ones (especially since this was a long weekend - Monday being Ugadi, but a holiday for us in Mumbai because my company has 10000 people in Hyderabad). We were determined to get the BERA test done, didn't want to procrastinate on it any more. So off we were to Hiranandani Hospital. A process of about 3 hours - delivered the bad news > NI has bilateral hearing impairment or simply put he wasn't hearing anything (I still struggle with calling him deaf)
What is BERA - Brainstem Evoked Response Audiometry. Basically, it is a machine-based test that reveals if the brain is responding to the sounds that the ear is getting. For children, they are sedated (mildly) - so that the audiologist can stick the plates on the forehead and beehind the ears, and plug in headphones that will convey the sounds.
Wrap > This was still sinking in. We were having guests over for the match - no point in avoiding that. NI was his normal self - he hasn't realized it. Need to think about options - and if we need to come back for the other test (ASSR) the audiologist recommended.
Next: From the Audiologist to the ENT Specialist
Saturday - April 2, 2011 > Like any other Saturday, we woke up thinking about the weekend - how could we possibly make it more interesting than the usual boring ones (especially since this was a long weekend - Monday being Ugadi, but a holiday for us in Mumbai because my company has 10000 people in Hyderabad). We were determined to get the BERA test done, didn't want to procrastinate on it any more. So off we were to Hiranandani Hospital. A process of about 3 hours - delivered the bad news > NI has bilateral hearing impairment or simply put he wasn't hearing anything (I still struggle with calling him deaf)
What is BERA - Brainstem Evoked Response Audiometry. Basically, it is a machine-based test that reveals if the brain is responding to the sounds that the ear is getting. For children, they are sedated (mildly) - so that the audiologist can stick the plates on the forehead and beehind the ears, and plug in headphones that will convey the sounds.
Wrap > This was still sinking in. We were having guests over for the match - no point in avoiding that. NI was his normal self - he hasn't realized it. Need to think about options - and if we need to come back for the other test (ASSR) the audiologist recommended.
Next: From the Audiologist to the ENT Specialist
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