Thursday, February 25, 2010

Why? More BAHA Woes

I would like to begin this update with a copy of an email I sent to our audiologist since we were still not seeing any response from Elias. Seeing that the speech therapist had agreed and had consulted several of her colleagues that were audiologist everyone was in agreement that something is not right. So it was determined that since we still had 2 more weeks before the appointment an email should be sent to the audiologist to update her with the lack of results. After all, last Wednesday she herself told us she could not confirm or deny that Elias was hearing. Make sure you keep that in mind as you read, it is important. Here is the email:

We just wanted to send you an email about the status of our BAHA trials here at home. After 5 days now of trying it 2-3 times per day and with our speech therapist working with us for over an hour we are of the opinion that Elias is not responding in any fashion to the BAHA. We have challenged and tested with and without. We have even placed it against our bone to test and we hear the difference. Outside of zero response with the BAHA we began to notice contradiction in the ABR results itself focused on the air unmasked hearing levels. We are showing on our handout 55-65 dB depending on ear, but we do not feel we are even achieving that. The speech therapist is now wondering about this as well. Our logic tells us that if he is not hearing as the ABR signifies without conduction then is it possible that the conduction threshold of 10-15 dB could also be skewed and therefore improper settings could be in place with the BAHA unit? We challenged the air unmasked several times with the speech therapist and as with the BAHA received zero response. Not even to vibration. We also tried the louder dB sounds with the BAHA, again nothing. We wanted to make you aware of this to see if there was any suggestions you may have in addition to what we have already tried. Did you want to try and see us again before the 10th for any further testing or adjustment prior to seeing Dr. Choo. Also, our speech therapist has offered to speak with you about her observations should you have any specific questions.

There is nothing confrontational about this email correct? She did give us her email and told her to send her a message if there were issues. So it is not as if this was an out of the blue contact. As mentioned before, having said herself that she could not confirm or deny Elias was hearing with the BAHA you would think she would appreciate any feedback and possibly even offer a solution. Instead I get a very defensive phone call informing me that the ABR is indeed correct and the fact that he is not responding to the higher dB thresholds is inconsequential. They are only concerned with the conduction hearing levels. She wasn’t even the one who did the ABR so I do not know why she was being so defensive over it. She then proceeded to tell me that and I quote, “Elias, is hearing but due to his developmental issues it is taking longer to adjust. Since he has never heard anything his brain is not processing the stimulus well. He has what we call maximum conductive hearing loss.” When i questioned how she could say he was hearing when a week ago she could not confirm or deny it she merely said that she has reviewed Elias ABR again and her expertise tells her that he is hearing. Okay then. While what she is saying to a degree makes some logical sense the fact that two speech therapist and four audiologist (the speech therapist has spoken to) all agree Elias should be responding more profoundly. The fact that he has never heard before makes it that much startling thus evoking a clear response. After my phone call I was slightly irritated. This whole process from the beginning was not going as it was suppose to. I have had 8 individuals very familiar with the process tell me they are astonished by the way our initial consult went last week, not to mention this. My slightly irritated went to raging mad a few hours later when I spoke to the speech therapist. The audiologist had called her to discuss the “lack of response.” As described to me by the therapist she told me that the audiologist essentially told her that she was the expert and you are the therapist. They began a debate over Elias cognitive ability. The audiologist told her that Elias has significant cognitive delays and those are the reason for his slow response, but that he was indeed hearing. She summed it up in this quote to the therapist, “Elias doesn’t get it, he is a slow learner.” First of all, she knows nothing of Elias, she spent less than 30 minutes with us and with 2 minutes she had Elias throwing a fit by placing the BAHA on his head, who the hell is she to judge his cognitive level. She is trying to handicap him rather than make him handicapable. Maybe its because she saw him with the trach, the central line, the colostomy, the fact that he is the size of a 9 month old at almost 2 years, the suction machine, the emergency bag, the oxygen tank we have to carry, but don’t use, and the binder thicker than war and peace for his medical info, maybe all that painted a picture of inability in her mind. But that is not why she is there. The therapist realized any further discussion was not going to yield any results. So she asked what her recommendation was. The audiologist said that trials have to continue (which we planned on anyway) and she is referring him for Aural Rehab which is an evaluation of trying to determine what he is doing, what he hears, and how he processes that. She then said she was ordering the BAHA and the therapist questioned why if we don’t know that is works. The audiologist snapped back at her and said, “look the parents have two choices, use the BAHA or accept that their kid will not hear and find another way to communicate.” I wish that bitch would have told me that. As it is the way she treated Elias’ therapist had me fuming, but what she said to her really has me boiling. Why must we constantly be forced to deal with such ignorant, unprofessional, insensitive, and uncommitted people. I am sick and tired of being told they are the expert. I am the expert on my child and no damn cookie cutter fits him. As the expert it is your job to recognize that and find alternate solutions to achieve the same result or establish reasons why that can not be accomplished. Not to pass judgment on parents who are are trying to help their child the best they can. Who is willing to point out things that do not seem right so that it can be fixed sooner rather than later. It is not to attack your credibility as a professional but for some reason it is taken that way. I use common sense everyday. Common Sense is the ability to take in all the information presented to you and come to a conclusion based on logic to the conditions you are trying to achieve. If you know 2+2=4 when you get 5 you ask why and try to figure it out. The bottom line here is, as the speech therapist puts it, this is a significant set back. We are really running out of time with our window of opportunity to ensure that Elias does not suffer any major language delays. It has been proven through studies that after a certain point there will be major delay. We are very rapidly approaching that moment. We have had to fight for this since May 1 , 2008. We have encountered resistance, excuses, incomplete testing, health related set-backs and now this. We need people who are going to work to find a solution, not be holy than thou about their expertise so much so that a parents voice is shut down. So again we are up against a wall. Just as with the nursing agency we have to either accept this unacceptable treatment and disrespect or move on somewhere else. At least with the hearing there are choices, but will make us have to travel. It would mean starting over because a different facility is not going to accept another ones for diagnostic purposes. The sedation risk makes it even more complicated, but we can not be confident that we are being treated fairly or even correctly. Especially when everyone familiar with the process tells us otherwise. She is literally the only 1 out of 8 people who thinks the way she does. That in itself is enough for me to question this. Since she is such the expert then providing proof should not be a problem to substantiate her logic. Why should a parent have to accept this? We still are not sure what to do yet. We have to wait 2 more weeks to talk with the ear specialist for his weigh in. Apparently the audiologist will be present at that appointment. We will probably seek out our options for a third opinion if we can not be provided with evidence to support her claims. I still do not see how she can even begin to say he hears, when she was adamantly against committing to one way or another last week and she hasn’t seen him since. That boggles mine and everyone working with Elias mind. Thankfully, our early intervention coordinator is an audiologist as well. She has also been shocked by this entire process. That right there should be the red flag right there. We just do not want to see all of the hard work and fighting for advocacy we have done for him go down the drain because we run out of time due to boneheaded people. Elias deserves a chance and the best chance, even if they prove it can’t be done. But do not accept something just because you are the expert and no one else agrees. That should warrant thinking outside the box. These are exactly the types of scenarios that create ground-breaking discoveries and advancement in anything, but particularly medically. I truly apologize for this rant, but these kinds of things are beginning to become a daily occurrence it seems. New hurdles, problems, and issues popping up daily before we can solve the current ones. We are exhausted, we are worried and the truly serious issues have yet to even begin. We want Elias to do whatever he wants to do. We want him to have the ability and the tools to achieve that. We do not need resistance towards doing the right thing even when it is not the most popular. We hope that one day we can look back on this period and say wow that was a tough time, but worth it all. I am only grateful that Elias is too young to understand the hurdles and he has found ways to conquer them on his own, but we are afraid that one day we will not have the ability to move the hurdle. There simply should be a more supportive chain of nurturing, help that is easier to find, and resources that actually do something constructive, not just send you off on another wild goose chase. Pray that we will get this hearing issue once and for all resolved and quickly regardless of the result. We are just ready to move pass this and keep Elias thriving.

1 comment:

  1. So sorry you all have to do this but you know what? No one else will advocate for your child like you all do! You know him best! Ask to speak to someone above her and file a complaint! Hang in there and keep up the good work!


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