Wednesday, December 31, 2008

Sad

Today is December 31st. Which in our world, means AJ's surgery is definitely not happening this year. Every time the phone rings and says "Children's Hospital" (we have talking caller ID) I jump out of my skin. They even called today. We sort of crashed and burned yesterday. I fought off tears most of the day...while calling AJ's providers and faxing our new primary insurance card and AJ's updated state insurance card. I called our CI Program admin and faxed the info to her first. She said she'd get it to our audiologist as soon as possible. I also called our new insurance and inquired about CIs. The person I talked to stated that it would be a covered benefit if it was deemed medically necessary and authorization was obtained. But, I could tell she was a bit unsure...so we'll see. She gave me the number for the medical manangment team as well. I included all of her information in my fax to our CI program admin.

We recently were told that our surgeon's OR time was being cut back...and that the entire CI team was getting incredibly frustrated. What does this mean? We could be scheduled weeks out-more than the original 3 weeks we were told. This cut in OR time could mean longer. I left another message for our CI program admin asking how far our surgeon is booked out he is already in the OR for 2009.

We've been going back and forth with our surgeon regarding choice of implant. We wanted the skinny on MRIs from his perspective. In Europe & Canada, one of the CI devices has been "ok" when MRIs were performed-while wrapping the head of the patient in gauze. The FDA is currently looking at this. Whether they will approve or deny is unknown. We also heard back from AJ's neurologist. We are armed with more information and must make a choice.

We've done everything we can on our end. This is a lot like when we were waiting for AJ. Totally out of control. And it SUCKS. We finally got him, got him the care he so desperately needed, and now we are stuck. Waiting. Still. Again. Every day that passes is a day that AJ isn't hearing. We've been given this awesome opportunity to allow our child to hear, and we just can't seem to cross the bridge to get there.

We are sad, but tomorrow is another year. Everything happens for a reason, although to be honest, we don't see the reason in this situation....

Best wishes to you and yours for a Safe, Healthy, Successful, and Happy New Year!

1 comment:

  1. Hang in there! Wishing you blessings for AJ in 2009!

    ReplyDelete

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