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.

4 comments:

Linda said...

So sorry, Tricia.

Mom

Aimee' said...

Ok, I work in the medical field...but in the emergency medical field...so I'm going to do some research on CI's so I can understand your posts about Emmi better. I'm always interested in learning more about medical stuff. If I could pass Math I would be a doctor. ;) Oh, and Chemistry. I'm really sorry though...I hate the way doctor's are sometimes. Even if you are the biggest baddest surgeon...you still need good bed side manners.

I am Trish Marie said...

Maybe I should put a little crash course in CI's up here! I guess I get used to knowing what I am talking about and assume everyone knows what an electrode array is!

Hetha said...

Wow, so much going on here! Great news about the speech gains she's making, and that picture of her in the pose is freaking adorable. She looks like a little natural.

We've been through the shorting and turning off and on of electrodes but he never performed so well in the booth. That's incredible. I hate that you have to add another issue to your worry list though.

I know what you mean about seeing the word "severe" and getting all whacked out by it. On the other hand, it's pretty interesting that she will be a candidate for the surgery. I wonder how they got their rationale so mixed up though? That's really bizarre!

Keep on keeping on....