Getting Ready for California

We are going to an Atresia Microtia conference in Palo Alto, CA this Friday to find out if Faith is a candidate for having ear canals created (atresia repair) and to meet a couple of the best doctors in the country for doing outer ear reconstruction. It's way too early to begin those surgeries, but it's a good time to be researching our choices and this conference is a great opportunity to learn about them directly from the surgeons. Plus we get to have a mini-family reunion with Fred's parents (driving up from San Diego), and his brothers and sisters-in-law, Bob & Hilma and Jim & Hue, who live in the San Francisco area. We will be celebrating Bob and Rosemarie's 56th anniversary while we are there too!!

In addition to getting to see Fred's family, we will also get to meet other families dealing with issues like us. I am especially excited to meet Cicily who is just 1 week younger than Faith and her mom Janalyn who started Cicily's Adventures blog and gave me encouragement to create Faith's blog and to start blending Faith's food. It's all the other families out there in the ethernet that have made dealing with Faith's issues so much easier by knowing we have never been alone in this journey and by having the benefit of learning from their experiences.

Prep for the conference and future jaw surgery:
In order to determine if Faith is a candidate for atresia repair, we had a CT scan done last Monday, Sept. 29th. There is a 10 point scale they use to determine if kids are candidates, called the Jahrsdorfer scale, named after a doctor who has been a pioneer in atresia repair surgery. We also need the scan for sending to the jaw surgeon (once we make that decision - see my earlier post on Jaw Reconstruction versus Jaw Distraction ). Since she needed to go under anesthesia for the CT scan, our ENT also tried to do a bronchoscopy, where he puts a camera tube down her throat to make sure everything looks normal so that when the day comes to decannulate her (remove her trach tube), that we know she has no other issues to affect her ability to breathe normally. He tried to do a bronchoscopy when Faith was about 6 months old, but could not get it past her tongue. This time he was able to see as far as the bottom of her vocal cords, but said that she is still an impossible intubation at this point and that she of course needs a jaw distraction to improve that. So, basically this served as a baseline tracking point to see how much space is gained from her first jaw surgery, whenever that will be.

Faith, as usual, handled the whole procedure without any complaint. In fact, the Anesthesiologist said she behaved like a 5 year old. :) We got Faith out of bed around 6am (about an hour before she normally wakes up) dressed and out of the house by 6:15 to check in at 7am. They took us back around 8am to prep Faith and they gave her a ton of stickers to keep her busy, which worked very well! I got to go with her into the CT room and hold her hand while they put her under -- I attached the tubing to her trach and I signed to her that it was medicine and that she was going to take a nap. She had no problems with it at all, and this is another one of those strange times when I am thankful for her trach. Many kids are absolutely terrified of going under by having a mask put over their mouth and nose.

I took a couple pictures of her day:

Faith busy putting stickers on her doll:

Faith showing off her 3-D butterfly sticker, I have never seen anything like it!

Faith's babydoll covered in cat stickers:

Faith still sleeping after the procedure:

CT scan results already and some GOOD NEWS!!!
So while I was busy typing this posting, I got a phone call from Sheri at the California Ear Institute (the host of the conference we are going to) to give me the results from reviewing Faith's CT scan which I mailed to them last week. I'm so excited I can barely contain myself -- Faith IS a possible candidate to have an ear canal made on one side of her head (on her right side which is more developed than her left). They graded her right ear at a 7 and her left ear at a 5, and they think the 7 may go a little higher following her jaw distraction. They recommended that we go ahead with implanting her Baha on the left since that will likely never be a good candiate for repair and then following her jaw distraction do another CT scan of the right and see if it goes higher on the scale. I believe even at a "7" they would be willing to do the surgery with a fairly high probability of success, but I will have to verify that when we talk to the doctors this weekend. I'm really excited about this because I was really expecting to hear, no she is not a candidate.

We now have a lot to think about because the surgery does not come with a 100% guarantee, in fact, I think I heard somewhere the grade on the scale correlates to the probability of success, meaning a 7 would roughly equal a 70% success probability. But, the thought of her having normal hearing, even in only one ear, means that she could hear while she is swimming or in the shower or at night when she is sleeping. While the Baha is amazing, it also has some drawbacks, including feedback when anything touches it (like a hat or laying on a pillow), maintenance of the surgery site for the rest of her life (but not unlike brushing your teeth or your hair regularly) and keeping a suppy of batteries handy and sending it in for repairs when it breaks - which we have been fortunate not to have to deal with yet. It is also emotionally hard to think of your child having a screw in their head with a small box attached to it and not worry about the teasing that may come with it. So, even though the good news is only for one side of her head, it is wonderful to know she has more than one option.

Well, this is way too long to expect you all to read, my apologies!!!

Love, Robin