Anguished Decisions

Anguished Discussions Over the Following Months (May 2010 - Dec 2010).  This all seems like a blur to me now.  I thought that if we were planning on doing the surgery, we should get our heads around it sooner rather than later because it's nice if you do it while the kid is young and having microtia doesn't become a defining part of his or her personality.  That's just my perspective; there are lots of other opinions, too.

I definitely heard a lot, such as: (1) wait until the technology and techniques have improved, (2) wait until Medpor is more proven, (3) don't do anything, it's all too risky and not worth the potential upside given that his hearing is OK in his left ear and his face is so cute and his little ear is cute also.  We had lots of family and friends who hooked us up with their ENT friends.  Honestly, most ENTs - even world-renown ones - don't know that much about microtia aural atresia unless they specialize in that area.  Therefore, unsolicited advice and "Did you call uncle so-and-so?"s were usually well intended attempts at helping me that were actually time consuming and not very helpful.

In the end, I ended up scheduling the appointments for surgeries so that we had those options, but my husband and his family were fairly opposed to doing the surgeries.  I, too, was really concerned - as there are significant risks.  Even up to the night before the canalplasty surgery, we were in tears thinking about subjecting our child to those risks.  It is not an easy decision.

Scheduling the Atresia Repair with Dr. Roberson

Scheduling the Canalplasty.  Starting in May 2010, I emailed Cheryl Medina (Dr. Roberson's Surgery Coordinator) our preferences for 2011 canalplasty.  Our first choice was in April around Spring Break, second was in January around Winter Break and third was at the beginning of the summer.  She said that we were #8 on the waiting list for 2011.  As time got closer, and through ongoing conversations with Cheryl Medina, we finally settled on a Canalplasty date of March 7, 2011, right after Ben's brother's birthday and a little bit before Spring Break so that he would have some time to recover in time for and during Spring Break.  Also, he'd have about three months to recover before surgery at the beginning of the summer.  In the end, as you'll see, we didn't end up doing surgery on March 7 - but fortunately, we live in LA, and that was OK!

CAT Scan with California Ear Institute - Dr. Roberson

California Ear Institute and Dr. Joseph Roberson.  May 26, 2010.  At this point, Ben was four years and seven months old.  I had decided to give up on the possibility of my insurance ever covering a low dose CAT scan, so I had called Dr. Roberson's office, and they happened to have a cancellation, so I quickly planned to cancel all of my appointments and drive with Ben to San Francisco the following day.  We got a 3:30PM appointment, so we could leave first thing in the morning and get there with plenty of time.

This was the first time that I had met/seen Dr. Roberson since Ben was an infant, and re-meeting Dr. Roberson - he was very nice and reassuring.  He came into a room and reviewed the results with us while my husband was on speaker phone (by cell phone - Dr. Roberson's patient rooms do not have any wired phones).  He indicated that Ben was rated an "8 out of 10" with 10 being the best.  He said that 8-10 ratings are good candidates for canalplasty.

It nice to hear that we had the option to do canalplasty if we chose to do so.  A lot of things to think about...The CAT scan was about $1,000.  I explained to Dr. Roberson that I was paying out of pocket, and he very kindly gave me a discount.  Yet another example of how these doctors don't do this for the money - they seem to really care about their patients.  It was a really kind gesture that I appreciated greatly.