Saturday, April 20, 2013

Sammie's Surgery is Scheduled and the Details Are Amazing

This past week we met with a surgeon here in St. Louis and scheduled the surgery to replace the cochlear implant on Sammie’s left side.  (If you’re just hearing about this for the first time and have no idea what I’m talking about, you can read about it here.)

The surgeon we have chosen to perform the surgery is Dr. Jacques Herzog.  Dr. Herzog is a highly regarded otologist and neurotologist and is the director of The Center for Hearing and Balance Disorders.  He is considered by many in St. Louis to be the authority on cochlear implant surgery.  

The surgery is scheduled for June 7th.  We are to arrive at St. Luke’s Hospital in Chesterfield at 5:30 am, and Sammie will be taken into surgery at 7:00 am.  The surgery should last no more than a few hours, and we were told she would likely be able to come home later that day.  Because we were required to spend the night for the first two surgeries, we were especially happy about that news.  

Like I said in my last post, Sammie’s audiologist, Valerie, along with an intern from Washington University, joined us for her appointment.   Valerie has a very close working relationship with Dr. Herzog, and will even be able to join Samantha in the operating room!  I am so incredibly pleased about this.  It will be much easier to let her go that day knowing that we have a close friend in the room with her.  At least that’s how I feel today :)  Valerie joked during the appointment that she would be there to make sure they didn’t shave off too much of her hair.  Sammie laughed about that a little bit, but her facial expression said, “Oh my gosh!  I forgot about that part!”  In reality, however, it should only be a small section of hair they’ll need to buzz, and I told her I’d shave a little of mine off too if it would help.  

Sammie’s first two surgeries were performed at the University of Iowa.  We are very fond of the staff there, especially Dr. Gantz, who was the first to give Sammie the gift of hearing 12 years ago.  It was very difficult decision to even consider going somewhere else this time.  However, she developed an infection following the last surgery - after we had returned to St. Louis - and nobody here would see us.  Local surgeons were unwilling to even look at her because she wasn’t their patient.  The staff at the emergency room completely freaked out when we took her there.  Our pediatrician, who had first agreed to take her stitches out, suddenly decided that she couldn’t have anything to do with it.  It was a horrible, stressful mess, and we knew we needed to do things differently this time.  In the end, only one surgeon was willing to see us and deal with the infection... Dr. Herzog.  He also removed the stitches for us, and I found a new pediatrician.

We’re feeling very optimistic about things.  Agreeing on a plan and finally scheduling the surgery have been a huge relief.  There’s even an amazing common thread that ties everyone involved together.  Follow this:
  • Dr. Herzog and Dr. Gantz trained together in Zurich, Switzerland.  They are actually very good friends and had spent the weekend prior to our appointment together.  Pretty Cool!
  • While receiving services at the University of Iowa, Valerie was on staff with Dr. Gantz, and was Sammie’s audiologist there.  Weeks after our family moved to St. Louis, Valerie also moved to St. Louis after taking a job at the Moog Center for Deaf Education, where Sammie was already enrolled as a student.  Total coincidence.  Awesome surprise!  In fact, they did not even miss one single appointment together.  Seriously!
  • Sammie was mainstreamed after graduating from the preschool program at the Moog Center for Deaf Education.  Dr. Gantz (Samantha’s first surgeon in Iowa) implanted the first graduate of the Moog Center for Deaf Education (in St. Louis.)  The first graduate of the Moog Center for Deaf Education (the one implanted by Dr. Gantz) was...Dr. Herzog’s son!!  SERIOUSLY!
So...Sammie’s first surgeon, Dr. Gantz, was the surgeon who implanted the first graduate from the school for the deaf that Sammie also attended, who was the son of the surgeon that will perform Sammie’s upcoming surgery.  If you don’t find that to be totally amazing, you might need to reread it!

For those of you wondering what the surgery will involve, Dave found this video online of Dr. Herzog being interviewed by a local news station.  It’s a few years old, but he sums the whole thing up nicely.  You can watch here.

Valerie and Sammie at the Moog Center for Deaf Education ~ Spring 2004

Monday, April 15, 2013

The Bad News and the Good News


Anytime someone asks the question, “Do you want the good news or the bad news first?” I always wonder who would ever want the good news first?  I always choose the bad news first.  It’s not that I like the negative stuff.  I just want to get the bad news out of the way - fast - so that I can move onto, and hopefully appreciate, the good news.  Most of the time, I assume that the good news is intended to lessen the bad news, so it only makes sense to take things in that order. So, I’m starting with the bad news.

One of Sammie’s cochlear implants is broken.  And unfortunately, it’s not the external, easily repaired or replaced part of the device (the processor). It’s the internal part of the device.  It’s the part that requires surgery to replace it.  It’s the part that’s inside her cute little head.  We’re not exactly sure why it is no longer functioning properly, but several outstanding doctors have reviewed Samantha’s audiology reports, and they all agree that it is not.  There are no more trouble-shooting options or professional opinions to wait on.  It needs to be replaced.

When Samantha received her first cochlear implant at the age of one, I remember being told that the internal device was “intended to last a lifetime.”  We’ve always known, however, that “intended to last a lifetime” does not mean “guaranteed to last a lifetime.”  After all, how many electronic devices last a whole lifetime?  In fact, given that we hope Sammie lives a long, long, healthy life, we never thought it would last her lifetime.  We’ve been expecting this - just not quite so soon.  


1.  Sammie has the most amazing audiologist.  We’ve been with her since Sammie was a baby, and she basically walks us through these things.  She is a perfect balance of concerned and casual.  She’s very honest with us, but doesn’t overwhelm us with a bunch of scary what-ifs.  If I tell her I have a few quick questions, she’ll patiently answer the 72 questions that I actually end up asking.  In fact, we have our first surgical evaluation appointment tomorrow, and she’ll be joining us, not because I asked her to come, but because she offered to come.  I adore her.

2.  Sammie’s first implant, the one on her right side, continues to work beautifully.  This is the side that she learned to listen with and that she wears all of the time, even to bed.  The implant she needs to have replaced was her second implant, which she received at the age of eight.  In fact, she received the second implant partially in hopes that she would gain a more balanced sense of hearing, but more so because we wanted to have a backup in case the first quit working. The opposite ended up being the case (the backup needs to be replaced), but we are still very grateful that she she will continue to hear during this process.  Given that Samantha is profoundly deaf, if she only had one implant and it needed to be replaced, she would not be able to hear at all.  That would be an incredibly difficult time for her.  She has become a hearing person, and we feel responsible to do everything we can to keep her hearing.

3.  Dave and I have known since December that Samantha would need to have this surgery.  However, because December marks the beginning of Samantha’s gymnastics meet season, which she trains for 20 hours a week all year long, we decided to keep it to ourselves for a few months so she could finish her season without that worry.

I was very nervous about how she would respond to the news.  I spent a great deal of time wondering if she would be open to another surgery, how I would convince her to be if she wasn’t, and if I should convince her.  Unlike her first implant, she never learned to effectively use or appreciate her second implant.  In hindsight, we wonder if it ever did function properly.  Because it was a lot of work with few results, I knew she sometimes regretted having the second implant.  

When we finally sat down to talk to her two weeks ago, after her state meet, she handled the subject with incredible maturity.  She almost immediately agreed that we needed to have it fixed.  She was remarkably calm and composed.  In fact, she was mostly concerned about how long she would be out of gymnastics for.  She is brave and bold, and she amazes me.