Tuesday, April 28, 2009

April 28th, 2009

I don't even know how to start this post...

I had the WORST ever appointment with our Surgeon/ENT today.  When we got there, they had us scheduled wrong and then tried to blame me for the scheduling mishap.  They had us down to see SLP, but the appt was specifically scheduled to see the Doctor about scheduling Carver's second CI.  Then we waited nearly an hour to see the doctor.  I booked another appointment 1 1/2 hours after this appt, so I didn't have a lot of spare time.  Once we got in to see the doctor, he says that he heard good things about Carver's progress and that he's on board with the second CI.  HOWEVER, he wants to talk to his colleages about whether or not it makes sense to proceed with Carver's second implant or wait until he is older.  I asked what had changed and really nothing had changed.  Shouldn't he have talked to his colleagues before agreeing to do bilateral implants?  He even got it approved through insurance for bilateral.  He had also given me the timeframe for the second implant.. 3-6 months after the first.  Now, he wants to talk to his colleagues about it??  What the heck!!  If I would have know this was going to be an issue, I could have gone out of state and had both done at the same time.  I'm so pissed right now that I waited this long and now the Doctor is trying to back out of something he agreed to do.  I could understand if we weren't seeing any progress, but we are.  Also, he said in the beginning that we would implant regardless of progress.  I'm so angry right now.  He also made a couple comments about how difficult it would be to map bilaterally???  What????  So, why did he take us on to begin with?  I'm concerned that his staff doesn't know how to map a CI at this point.  I've had my doubts in the past, now I'm seriously concerned.  I'm so frustrated, I don't know what to do.  

4 comments:

stacy said...

come back here! you can even stay with us.

Emily said...

I'm sorry that your ENT is giving you trouble. My son Noah just got his second CI, and I think it's the best thing we ever did for him. Because he's deaf-blind, the ability to localize sound from 2 CIs is going to help him be so much more independent when he's older than he would be otherwise. Definitely keep pushing!

Laura said...

Oh Shannon I am so sorry you have to deal with this, can you take him somewhere else? That is wrong what he is doing if he agreed to do bilateral then thats what should be done especially if you are seeing improvements, why wait till he's older that just doesn't make sense to me! I think you need to talk to someone else, go above him! Again I am sorry. you have enough to deal with without this CRAP!

Denice Solgat said...

I say BRAWL away...you are putting so much effort into the ci for your kiddos...and say your young mister hits his head and has an internal failure...then what? How will you explain to him he has to wait for the second surgery? Your son, of all people NEEDS to have the "insurance" of the 2nd ci..it is just not fair to deny him...and localization is soooo much easier with the second ci so, yeah...pull out the sucker punches..." you know Doc, you know us better than anyone else, and God forbid anything happen to you...who would help us ? I dream about this at night, and just need to know I am doing my best for my child....if I die tomorrow, I will leave this world knowing I did all I can....Your kids deserve to hear out of both ears... Cyber hugs!
Denice from cicircle