Wednesday, December 12, 2012

Azlan update #2

We went to the ER last night and had bloodwork done. The ER doctor conferred with the on call ENT in Spokane and both agreed to send us to Spokane in the morning.

We came home and this morning when we called our ENT in Spokane we were shocked to hear him say "make an appt for Monday".  :(  I somehow get hooked in with doctors who are passive...I have no idea why.  Dean got on the phone and was pretty strong saying how unhappy he was that we got sent home in the first place and that we are not being taken seriously.  Our frustrations definitely climbed with the doctor's office but Dean stayed on it and finally got a phone call back with a better plan.

Meanwhile we contacted our friend's dad who is a renowned infectious disease control doctor.  We explained everything to him (he's the one that put us on the 1 year of antibiotics) and he wasn't that happy. He said our chances of killing this once and for all are slim and clearly we are just holding it off but not KILLING the strep.  Therefore the moment we go off the meds...it's back.  We have no desire (neither did he think it was a good idea) to be on long term antibiotics just to hold it away long term. His suggestion was to have the abutment removed, while in surgery culture the infection, and kill this once and for all.  After we got off the phone we noticed the swelling had dramatically subsided. We called him back and he said thats not uncommon when you are just keeping the infection under control it's going to flare up and down. He however suggested one more oral antibiotic to try before we remove the implant.

We are in touch with our surgeon and waiting to hear if he will prescribe it to give this implant one last shot.

Friends are asking about my gut feeling.  Sadly, proven to be quite trustworthy when it comes to Azlan's medical care...says to remove it and start over with a clean slate in a year or 2.  I am however willing to give it one more try with this new drug and see where we go.

Here is a picture of his Baha, Julie.  This was at the beginning of the first infection when kept telling the surgeon there was this sore developing and he was telling us it was 'normal' (...?).  The lack of hair growth around the surgery site, however, still looks identical to this picture.  :(

Thank you all for praying.

8 comments:

  1. My daughter has a different kind of bone conduction hearing aid that attaches with a magnet rather than a abutment. Ana had a ear pit cyst removed whe she was three that gave us lots of issues and kept gettig infected so I was worried about the abutment and infections.

    Have you looked into the Sophono. It works justthe sae as the baha, but without the abutment.

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  2. Anonymous~

    I literally felt sick as I googled Sophono. Oh the troubles we could have saved. :( However it gives me hope for the future. Where do you live? Was it difficult finding an audiologist who dealt with this company? See my surgeon says "no other patient I've ever operated on for the BAHA has ever gotten infection from the OR or killed hair follicles except Azlan" but after looking at Sophono's site...I'm starting to wonder if I'm being told the whole story. Thank you for sharing.

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  3. We are in the suburbs of Chicago. The Sophono has only had FDA approval for use in the US for about 18 months so still not very common.

    I learned of the product thru one of the online Yahoo Microtia/Atresia groups I belong to. There is a rep from Sophoo on the group and she is local to us so we were able to communicate and meet. She gave us a loaner for Anna to wear on a headband and the rest is history.

    Where are you all located again? I can check with my contact at the company to see if they kow of any ENT's/audiologists in your area that work with the Sophono.

    Julie


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  4. We are WA state. Dean and I are still in shock that we've never heard of this. It's brilliant. Since the Infec. Dis. doctor bets his BAHA will have to be removed...we are excited about this! Is it also done in a 2 stage surgery? I assume there still has to be a screw implanted into the skull since it's bone conducted...?

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  5. Julie I just added a photo so you could see what his looks like

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  6. A magnet is implanted much in the same manner as the magnet for a cochlear implant is. (Anna has one of those on her other ear)The magnet is held in place by tiny screws, but nothing like the screw the abutment screwed into.

    It is one sugery. We were in the hospital at 6:00am and out that day at 1:00pm It is a closed site and once the incision heals you can hardly tell there was any surgery.

    There is the inner magnet, the otter magnet that sits on top of the outer magnet and the processor that "snaps" onto the outer magnet. It all sits on the bone.

    So sorry about Azlan having the infections. It looks painful.

    I'll email the rep from Sophono that I know tomorrow to see if she knoes any ENT's in your area.

    Julie

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  7. Janice:

    The rep for your part of the company is Alex. Contact info is below. This is not somone I have dealt with as we are in a different part of the country. He did say there were several ENT/audiology teams that they work with in Washington.

    alex.goncarovs@sophono.com

    Julie

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  8. Janice:

    You can email me if you have any questions from a parents point of view of the device.

    jrobbins@gailborden.info

    Julie

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