Journey

God has answered a prayer...I have so much more peace about Brennan's journey ahead of us!
We attended a conference yesterday at the Disney Hotel. It was a conference just for Microtia/Atresia. Though most of you have not heard of it, it does affect about 1 in 8,000 births. So, though that may be a small number, it sure is a big deal when it affects your family. The conference was from 8:30am to 4:30pm. It was a day filled with Doctors and medical experts discussing various topics about microtia/atresia.
An audiologist first spoke about the "ear"... anatomy, how it functions, different hearing issues etc. One doctor talked about the surgery he performs to create an ear. Another doctor discussed the surgery they do. There are 2 surgeries to choose from, other than leaving it as it is or using a prosthetic. One surgery is 4 stages of surgeries that use part of the rib cartilage to create an ear and a skin graft to attach to the head... crazy stuff. The other surgery is using a porous polyethylene implant, "medpor," (plastic) to use with a skin graft and skin membrane to create an ear and attach to the head. We are going the medpor route. It's a stage of 1 or 2 outpatient surgeries that seem to have the best results. Brennan will be having that surgery March 1, 2011.
Next, another doctor spoke about the various hearing aid devices or cochlear implants used to help hearing. Another surgeon presented the surgery for the atresia repair, which will be Brennan's first surgery this October. The doctor gave a detailed, step by step and very graphic presentation about the surgery using pictures and videos. It was hard to watch but good for me to see what my son will be having done. In a nutshell, Brennan has no ear drum or ear canal. The CT scans he had done last November show that he has the inner ear structures. Therefore, he qualifies for the surgery that will improve his hearing on his left side. The surgery will probably be about 3 hours total. The doctor will use a VERY SMALL drill to create an ear canal through his skull that will connect to his inner ear structures. Then the doctor will use a tissue membrane from Brennan's scalp that will be used as an ear drum. The doctor will attach the new ear drum and then use a skin graft from his scalp to "coat" the new ear canal. Brennan will have a plug in his new ear canal for a couple weeks and we will go to several post-op appointments within 8 weeks. His hearing should improve but it will never be up to 100%. It will help him localize where sound is coming from and hear softer sounds. His language acquisition will improve as well. He will have to see an ear doctor 2x a year for cleaning, but that should be the only maintenance for his new ear canal. It was such a blessing to hear the doctor speak about the process and we were able to talk with him one on on... It was great to talk with him since this is the surgeon that will be operating on our son in 2 months.
Another blessing for being at the conference was meeting new families who are going through the same thing. It is such a great support system being able to help each other in our various stages of surgeries. There was a boy and his family from Mexico at the conference. The boy was around 7 years old and he had the surgeries done already. He had the new ear put on about 3 years ago using the medpor technique. He had the ear canal done 2 months ago with the same doctor we are using. The little boy let us touch his new ear and ask him questions about the surgery and how his new ear is. FYI...his new ear looks amazing and I couldn't tell the difference from his "normal" ear. It was amazing. His ear canal looked great! It was so nice to talk with him and his family and it put me at ease.
Our next step... preparing for our trip up north. We will be in the Stanford area for 1 week for Brennan's surgery (including pre-op and post-op appointments). We have family staying at our house to be with Faith. We are just trying to prepare Brennan for his surgery to "help him hear better!" We are also trying to save, save, save... since we have to get a hotel for a week and who knows how much insurance will pay...that's another story (and another prayer request!).
Thanks for reading about our journey. One day I will be so glad when this is all over! I will look back and read these posts and be so thankful that we have helped Brennan as best as we knew how and hopefully be able to help other families beginning in this process.