Journey to Baha

We have a surgery date! Reed will be getting his shiny, new post placed on August 14, 2009! Had I known it was this easy, I would have thrown my hissy fit months ago, lol. Ah well, they’re rushing us through because of the mix-up so he can have his post placed before school starts. As it turned out, the surgical coordinator was told to proceed with the BAHA like she would process for a cochlear implant. She was waiting for paperwork from Audiology that was never coming. I called this morning and put my foot down, demanding to know what the holdup was and she got everything she needed (including an instant decision from Molina Healthcare) within a few hours. So we are on the calendar for a week from Friday. Reed is over-the-moon thrilled. I thought his face might explode from the grin he gave me when I told him. ;) At this point, I’m thinking he should be getting the new BP-100, which is the silver lining in the long wait.

Just when I was so anxious for everything to proceed, now I’m hoping it takes a little longer while I make a decision.

I have recently heard reports of a new, and possibly better, processor coming on the market later this year. As I understand it, this competing device will be fully programmable and quite a bit smaller than the BAHA we were previously decided on (the only one currently available). Unfortunately, it isn’t on the market just yet, so information is sparse, making it difficult to decide if we should wait for the new one or go ahead as planned with the exisitng choice. Argh!

I guess I should just be glad I found out about this now, instead of AFTER his surgery. ;)

Time for a status update:

There is nothing to update.

There, that was easy. It’s not as simple as all that, though. I was getting impatient, so I called the Surgical Coordinator to check our progress. While she hedged adamantly that these are only estimates and there is absolutely nothing within her power to keep to this timetable, it was nice to get a general idea of how much longer we’ll probably be waiting. Apparently, we are right on schedule and things should be headed to the insurance company for approval soon (hopefully within the next couple weeks).

  1. It takes 2-3 months for the Surgical Coordinator to receive the full workup and reports from the Audiology department. (this is where we are now)
  2. It then takes another 2-3 months to receive insurance approval from most insurers.

I was hoping the hospital would be able to do things a little quicker on their end, but overall I want it done right so we can hopefully be approved on the first try and not have to apeal. It’s nice to have something to look forward to and she’s promised to call and let me know when it goes to the insurance for approval.

I am starting to feel forgotten about by the hospital. It has been nearly 2 months and we still have no word from Surgical Boarding. I supposed we’re still in “no news is good news” territory, since we haven’t been rejected either, but sheesh! Throw a girl a bone here and keep me updated. I think I’m going to break down and call the clinic tomorrow and see if they have any news on our progress. Even an estimate of how long the process should take would be nice. It  would give me some light at the end of the tunnel. As we are now, we have no idea if it will be weeks, months or ever. Argh!

You know, I never was very good at this waiting thing. I am, by nature, an impatient person. So when it comes to waiting for something that is such a good, exciting thing for one of my kids, I am fairly miserable.  I hate that there is nothing I can do to make the process go faster. The bottom line is, we need isurance approval; and approval for non-critical surgeries like this takes time. So we wait.

While I’m waiting, I am trying to fill our time with things I can do. I have scheduled Reed’s tour through the surgery department and ordered him a medical playkit from the hospital (which came today and he was so excited). I spoke with the Child Life department this afternoon about getting him some pictures of the dressing he’ll be sporting post-op. And beyond that, I have obsessed. I have googled the BAHA and everything associated with it so many times, I’m starting to annoy myself. My poor husband and friends. I can only imagine how sick they are of hearing about it. Ha! Oh well, all I can do is wait, so wait I will. I just hope it doesn’t take too long, or I might be too crazy to consent to anything by the time they finally get this thing scheduled.

It’s an exciting day around here. We’ve just returned from the ENT where we started the ball rolling on Reed’s BAHA surgery. Turns out my neurotic need to have all the i’s dotted and t’s crossed when he was younger has come in handy. His CT from several years ago was what put us over the top for a decision today. His CT was normal, so his hearing would likely be helped by the implant. I filled out the surgical boarding forms in the office and now we just have to wait for insurance approval and an OR date!

Reed was so excited when the Dr. said he’d be a candidate for one, he was lobbying to get it done today! He apparently thought we were there to get it done, not ask about it. He was looking around the room for the drill, wondering if he’d be home in time for lunch. He was quite disappointed when I told him it probably wouldn’t be for at least a few weeks. I’m not sure how long to expect the approval process to take, but it would be great if he could be activated before Daddy takes the boys on their trip to New York City in September. Before school starts after Labor Day would be even better.

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I figure this whole blog will make a lot more sense if I give some background, so here’s where we begin:

Reed was disgnosed with a unilateral hearing loss at birth. He passed his newborn hearing screening on his left side, but failed on his right. We were assured that many kids fail because of amniotic fluid trapped in the ears and go on to pass subsequent tests. We made our appointment with the hospital-recommended audiologist and set about enjoying our new bundle. A few days later, we packed him up in the car and headed back to the hospital to have him rechecked, confident that everything would be fine by now. After all, birth defects are something that happen to other people’s children, right? And long before he was born I was a deaf education major, for crying out loud! The odds of having a hearing impaired child would have to be astronomical, right? Wrong, apparently. Reed once again passed on the left and failed on the right. Still hopeful, we asked what the chances were that the results were still caused by fluid and were told it was extremely unlikely. There was no evidence of fluid in his ears and his tympanograms were normal. We were scheduled to return for an ABR to determine his actual level of hearing. We returned twice for the ABR, and both times he steadfastly refused to sleep through the test (have you ever seen a 1 week old newborn stay awake for 2 hours, despite being nursed and rocked twice? It’s not a pretty sight). So at 5 weeks old, we returned once again to have him tested under sedation. The results were not what we’d hoped for: a profound unilateral sensorineural loss. We discussed his prognosis with the audiologist who told us that he would do just fine with the hearing on his left side. We asked about hearing aids and cochlear implants. He was not a candidate for either. Hearing aids just make the sound louder so it can be picked up by less-sensitive hearing. Reed has no usable hearing on that side. Cochlear implants are not an option for those with a unilateral loss. He mentioned the possibility of a CROS aid, but said in his experience they were not largely helpful and most kids were unhappy wearing them. He recommended waiting until he reached school age and letting him help make the decision. And so we waited.

We came in once or twice a year for audiograms, and were pleased to see no change. His hearing is completely stable for now. And so we waited some more, unhappy with the choice of CROS aids or nothing. Periodically, I’d ask Reed if he was bothered by his hearing loss, and he never seemed to care. Finally, in January 2009, after an annual audiogram at school, he admitted that he wished he could hear bilaterally. I explained about the CROS aids, and he seemed interested so I made an appointment with his ENT.

While researching CROS aids, I stumbled across a mention of the BAHA (Bone Anchored Hearing Aid) for Single Sided Deafness. I was intrigued. Nearly everywhere I turned for information on it gave glowing testimonials from people who had and loved it. The same could not be said for the CROS aids. This seemed to be just what we were looking for. I think I may have driven everyone I know a little crazy, talking about it so much while waiting for his appointment.

So now you’re up to speed. Stay tuned for the results of today’s ENT appt.

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