Tuesday, February 22, 2011

February is for Hearts...

Well it's that time of year...or I guess I should now say, every-other-year. It's time for Kennedy's cardiology check-up tomorrow afternoon. She's done so well over the years that she has been reduced to being seen only once every other year, which is a great thing. She has been home from school today with a fever and cough so I'm hoping she is okay to make it and we aren't deferred, especially since she only sees them every other year now.

The routine begins: a letter arrives from the IWK Health Centre with instructions: "Kennedy will be seen on February 23rd, 2011 for a cardiology appointment. She will also have an ECHO before the appointment. Please arrange for an ECG at least two weeks before the appointment." She had her ECG a few weeks ago and tomorrow will be the ECHO and the general cardiology appointment with the IWK travelling clinic. I'm not anticipating anything major but history has taught me that I need to be prepared...

When she had her first open-heart surgery at 9 days old, we were in the shell-shocked stage still. Too stupefied to truly realize what was happening. I thought, though, that when that was over. One thing to check off the CHARGE syndrome list: we were done with heart issues except for regular check-ups. Sometime in late 2003 when she was five, however, during one of those regularly scheduled check-ups, I got hit by a Mack truck blindsided by the clinic doc who nonchalantly told me, "Yeah, so we're looking at another surgery in a few months for..." Needless to say, I don't remember much of the rest of that appointment. In fact, I remember driving to a nearby park and, after arriving, I couldn't remember driving there at all. My mind was just a numb blur of astonishment. I just kept thinking, "Another heart surgery? What? We were done with that part four years ago! That part was before choanal atresia surgeries, before hearing aids, glasses and eye patches, before gastric feeding tubes and Nissen fundoplications. This was just supposed to be an in/out/forget-about appointment." My mind was whirling but I did manage to get myself together enough to call a friend who lived near the park and carefully drive us over there so I could continue the murky journey back to coherence. Nobody had ever told us there might be a need for a second surgery so it really did throw my naïve brain for a loop.

The second heart surgery was definitely harder for us because Kennedy was so much more 'knowing' at that point. She fought tooth and nail going into the O.R. and even whacked me in the face because she was so upset. But, in true Kennedy fashion, she came through the surgery just like she always does and we got through it too - after a month away in Toronto for everything that needed to be done (cardiac cath, two-week wait, and surgery.) After that surgery, the surgeon did tell us there might be a possibility of her needing another surgery at some point in the future.

At her last checkup, I spoke to the IWK cardiologist about the possibility of another heart surgery and he told me that things looked really good and that it wasn't definitive that she would need one, which allayed my concerns somewhat. I had been operating under the assumption that it was just a matter of time. Nevertheless, each year, I wonder if I'll hear the news I don't want to hear, or if we will once again coast under the radar with a healthy check-up and go on with the status quo for another two years until the next appointment letter arrives. I don't dwell on the what-ifs because it just isn't productive in the day-to-day hustle and bustle of our lives but this particular every-other-year appointment does make me stop and consider the possibility of another what-if.

So, with all that being said, do me a favour and please keep a very special & precious heart in your thoughts tomorrow and hope we get to coast for another couple of years.

Sunday, February 13, 2011


Since Kennedy was six, she has had a BAHA Divino hearing aid implant. She has done fairly well with it, however, it has required many repairs to the tune of almost $600 each time. Seeing as it is getting to be almost seven years old, we began looking into replacing it last year. I was informed by Cochlear Canada that they will no longer be making the Divino and it will be hard to get parts for, etc. in the near future so it became a little more important for us to find something sooner rather than later.

So, we learned about their new BAHA, which was originally called the BP100, then the Baha 3 (the names are still interspersed at the website so I'm not really sure what it's supposed to be officially called now). We were happy to learn it would be programmable, instead of just boosting everything straight across, we would be able to customize it to her individualized hearing loss. There were also other improvements, such as GORTEX moisture protection, for example. We secured a BP 100 loaner for Kennedy to try last year and, unfortunately, we did not like it at all. Both the audiologist and myself had trouble getting it turned on - not a good sign when both an audiologist and a teacher for students who are deaf/hard of hearing find the turning on of a hearing instrument to be bizarre and inconsistent. Unlike the Divino, the BP100/Baha3 also did not have a volume dial, so Kennedy was unable to adjust her own volume, which she does quite frequently, depending on the situation. She did not hear better with the BP 100 or the Baha 3 (we tried both of these) but Cochear reports on their website that in their study, "patients showed better hearing in noise, using a Baha 3. The average improvement was equivalent to about 25% better performance than with their Divino listening with both ears." Another strike against the new BP100/Baha 3 was that the configuration of the three-pin electrical input designed for connecting external equipment was changed on the bottom of the BP100/Baha 3 to "Europin" design, which was different than the Divino. This meant that the accessory connector we paid more than $300 for with her Divino and that she uses daily, would also have to be replaced. Also, her receivers for her FM at school would have to be replaced. Difficulty with working the buttons to turn it on/off and operating the volume control meant less independence for Kennedy and more frustration for us; this coupled with the fact that we would have to replace other needed equipment led to the decision to hold off because we had heard that in November of 2010, there would be a new BAHA product available in Canada through Oticon.

In late December, we got a loaner Oticon Ponto and Kennedy has been doing great with it. We find she is hearing very well with it and her teacher for students who are deaf/hard of hearing reports that she notices Kennedy is not asking her to repeat herself at all since she got the Ponto. We have tweaked the settings a couple of times with her audiologist to get it just right. The audio connectors are the same as from the Divino, so she has been able to try it out with the computer/iPod as well and likes it. The number one reason we have been thrilled with the Ponto, though, is the level of independence Kennedy has been able to achieve with it. For the first time since she was six years old, Kennedy can put her own BAHA on herself! The design of how the Ponto fits onto the abutment is different than the Divino. Whereas you had to get a small rim into the inside of the abutment with the Divino, the part that goes onto the abutment on the Ponto is bigger, to fit 'around' the abutment. This was huge in terms of her independence. Not only could she put it on herself, all you have to do to turn the Ponto on is put the battery in and close the battery door! No pushing and holding buttons and waiting for beeps multiple times, just put the battery in and it's on. She is also able to operate the volume control very easily. She can put the accessory connector on and off herself so when she wakes up early and wants to listen to Justin Bieber on the computer or iPod, she can get the implant on, attach the connector and adjust her own volume. YAHOO! One last bonus in my opinion for the Ponto was its design. It's not square/boxy, but a nice, teardrop design. While it doesn't have the same colour options available that the Baha 3 does, the chroma beige colour fits in really nicely with K's blonde hair and I do like the shape of it quite a bit better.

So for us, the Ponto is the way we're going to go. We are looking into funding options at the moment so we can order one. I know a lot of people will do well with the new Baha 3, but it really was just not for us. When you're 13, you want optimum independence, so that's why we are going with the Ponto. It's nice to have a choice now - with behind the ear aids, there have always been multiple options, but with BAHA, there has been only one for a long time. Thank you Oticon! :)