Monday, April 6, 2009

Eck.

I have been following Seth's story, and he is all set to have his implant surgery this week! His mom posted about watching a video of the CI surgery. Eck. But she also explains pretty well what exactly happens during surgery, if anyone is interested.

http://www.profoundlyseth.com/2009/04/not-for-faint-of-heart.html

Wednesday, April 1, 2009

Today's Appointment

Emmi's audiology appointment revealed two issues. One, her craniofacial doc is an idiot. Okay, actually, I already knew that. Idiot might not be the right word, he is apparently the best surgeon around, so perhaps ass is a better word? The second issue is the short circuit has reappeared in the left side.

A few months back, after Emmi complained for MANY months, it was discovered that 4 of the electrodes were no longer in the cochlea. One, the 9th electrode, was sitting right on the window, probably the cause of the uncomfortable sensations. All four were shut off. A review of the CT scan done prior to implantation of the right side showed this problem was present back in 2007, meaning it had more than likely shifted right after surgery. Not great news, but better than the alternative which was a random shift for no good reason. On top of that, Emmi has a short between electrodes 2 and 5. First, they shut off both, then they shut off only one, then the short disappeared. When the four extra-cochlea electrodes were shut off, the short was gone. We thought we were in the clear with eight electrode still functioning. However, today, the short is back. Meaning? At least one of the two has to be shut off. She is down to seven, putting us back in that "iffy what should we do" land. On paper, it looks bad. She should probably be re-implanted. Technically she should not be hearing well on the left side. Except, she tested at 20 decibels for speech in the sound booth today! Better than the right side, even. So we will wait and watch.

During the appointment, her audiologist inquired about her VPI and how the appointment with the craniofacial doctor went. I told him what we were told (Emmi was not a candidate due to low tone caused by her genetic condition). Her audiologist was confused. It was not what he had been told, so he pulled up the plastic surgeon's notes. Clear as day, it said Emmi was simply too small, that she was, in fact, eligible for the surgery, and we were due back in one year when her weight should be sufficient to perform the surgery. What?! Are you kidding?! Not at all what were we told. I spent the rest of the afternoon firing off several angry emails to both the plastic surgeon's office and the Speech and Language Pathologist (who I love, and who apparently has been right all along, so she didn't get and angry one...just an email.). Hopefully, I will get the real story soon. So Emmi may still be a candidate for the surgery. I honestly don't know how I feel about this, but I will wait until we hear back.

Aside from that, I was reading over the audiologist's shoulder and noticed it said "severe VPI." I mean, I know she has a VPI. I know it causes problems. But there is just something about seeing "severe VPI" written by the doctor of all craniofacial doctors that makes it seem even worse.