Spotlight

Drew and his sister are pictured with Drew's Cochlear Implant Surgeon, Dr. Richard Kang, in the latest edition "Spotlight". The article is highlighting the work being done by the Hearing Team Parent Advisory Board, of which I am a member.

Our cochlear implant program has been experiencing some growing pains, which our family has personally encountered, and as a result forced us to make some difficult decisions. While we have certainly had our frustrations, we are very happy that Dr. Kang, and his staff, recognize the need for continuous improvement, and that they have reached out to parents to understand our needs. I am hopeful that this group will be able to make some significant changes to better the program, not only for my son, but for the community at large.

Too Good to be True?

I have experienced some of the greatest challenges of my life over the last seven months. There were days after Drew was diagnosed that I did not want to get out of bed and face his deafness each morning. Luckily my family and friends were there to support me, and finally I realized that staying in bed, crying all day would not change Drew's diagnosis. So I made a decision; I would get of bed each day. And I would get myself dressed. And I would learn as much as I could about deafness, cochlear implants and oral education. And that's what I have done. Today I feel like I have reaped my first reward of hard work and dedication.

Dr. Kang called today with a date for Drew's surgery. Drew will have simultaneous cochlear implant surgery on June 6. Although not confirmed, he should be activated sometime during the week of June 25. I can not believe that we have traveled to this point in our journey. During these months I have felt like we would never get to the point of having him implanted. Now there is a date on my calendar! We are getting closer to the day that Drew will hear.

Even more amazing (and I'm still pinching myself to make sure I am not dreaming) is that Dr. Kang's office received verbal approval for the surgery from our insurance company today. We should receive a written approval letter within the next week. We are going to celebrate when we receive the letter, but until Drew's ears have two electrode arrays in them nothing is certain. I have read horror stories from other parents receiving calls from their insurance company the week of the surgery with a change in the approval status.

The Cochlear Implant team will finalize Drew's candidacy at their May 8th meeting, but we do not anticipate any issues. At this point, we are just waiting for June 6th to come and praying that nothing changes in the approval status of Drew's implants. If all goes as planned, Drew will be hearing by the end of June. Someone pinch me!

CT Scan Results

Dr. Kang called yesterday with the results of Drew's CT scan. Drew's inner ear formation is in tact and there are no structural issues with his inner ear. This confirms his candidacy for his cochlear implants! While this is the news we were expecting, we are very happy that our son has two perfectly shaped cochlea's!

As with the course of this journey, things do not goes as we plan, or as we are told. Dr. Kang did not schedule a date for Drew's surgery yesterday. He confirmed that he will implant Drew in June, but would like to schedule the surgery after our CI Consult with the mapping audiologist, which is Wednesday and after our meeting with a speech pathologist, which is April 25th. So stay tuned, it will probably be another month before we have a confirmed surgery date.

CT Complete...Barely

Drew had his CT scan today, a critical step in moving forward as a cochlear implant candidate. This will allow Dr. Kang to see the anatomy of Drew's inner ear, and to ensure that Drew has a cochlea for the electrode array of the implant to be inserted in.

When the CT scan was scheduled we were told that Drew would need to be sedated because he would need to remain still for the scan. To say that the sedation did not go as planned is an understatement. Drew managed to fight off all of the medicine he was given, never was drowsy, let alone sedated, and remained awake for the entire procedure. To say that Drew's Dad and I were concerned that they would have to reschedule the scan would be an understatement.

Thanks to the wonderful nurse and radiologist at Columbus Children's, Drew was still enough for the scan to be completed today. The nurse and radiologist managed to take a pacifier (which Drew has never had before), dip it in cherry syrup, place it in his mouth, securing it temporarily by using medical tape wrapped around his head. Then they strapped him to the table to reduce as much movement as possible, and ran the scan. Drew was amazing, allowing all of this to happen to him while starving, since he had not been allowed to eat after 2 AM!

We are expecting the results in the next two to four days. Dr. Kang told me that he would call with the results and assuming the scan comes back as we anticipate, we should have a surgery date within the next few days!

Moving Forward

We are very excited with the pace at which we are now moving toward having Drew bilaterally implanted. I am so happy that we re-evaluated the decisions we had previously made and that we decided to change course.

In the beginning, we had only looked outside of Columbus because the reputation of the cochlear implant program through Children's Hospital was poor. Lately we felt we were not being aggressive enough with Drew's intervention, and decided to re-evaluate our previous decisions.

Since then, we have learned that the tide is changing with an increase in the strength of the Columbus implant program. Similarly, we have discovered that many of the negative comments we heard regarding Columbus audiology program were not entirely applicable to our situation. Some of these initial negative impressions other parents had have changed since the arrival of Dr. Kang and the perspective he brings to the audiology program, and other opinions we heard on the perceived weakness of the audiology program were due to certain children struggling with their hearing progress due to other barriers that those particular children were facing.

With this new, aggressive path we are taking, Drew will be having a CT Scan on Wednesday. Dr. Kang told us that as soon as he receives the results from the CT Scan, he will schedule Drew's simultaneous surgery. Our goal is to have the surgery when he is nine months old. Dr. Kang's office will work with our insurance company to ensure coverage for his surgery.

Please keep Drew in your prayers on Wednesday, as he will be under an anesthetic for the procedure. We will let you know as soon as we have the results from the scan and Drew's surgery date!

Back to the Drawing Board

What made us start questioning our decision to go to Cincinnati? We thought we had everything figured out. We have agreed to be a part of the research project Dr. Choo is doing at Cincinnati Children's. We have had all of Drew's diagnostic testing conducted in Cincinnati. Why the sudden change of heart, you may ask. We have begun to worry about the aggressiveness of the program in Cincinnati.

I went to a parent support group meeting a couple of weeks ago and was asked to talk about the things going on in Drew's world. I could think of nothing to say. Sure we put hearing aids in each day and do the activities we have been given through our early intervention program, but basically, we are doing nothing. We are enjoying our beautiful, fat, profoundly deaf baby boy. And while we cherish these precious moments, each day that passes is one more day that he can not hear. Why are we sitting around waiting to have an MRI and gain insurance approval for his surgery? Why can't Drew be implanted tomorrow? Why do we have to wait? And why have I not questioned this time frame issue more? As I pondered these questions, I asked myself, "Are we are being as aggressive with Drew's implants as we need to be?" I got home from the parent support group meeting and Drew's Dad and I questioned ourselves the rest of the day. The rest of the weekend. And we are still questioning ourselves today.

Drew's Dad and I have been very aggressive about everything regarding Drew's profound hearing loss from the beginning. (Are you surprised?) We have spent countless hours researching everything on profound hearing loss, cochlear implants and oral deaf education. We have traveled out of state for testing and visits to the top oral deaf education schools in the country. And through it all, we have learned that there is no one way to proceed forward. Cochlear Implant technology is evolving daily. There is no set course of action. The standard protocol changes from one implant center to another. Throughout all of this, one thing has remained constant: we need to utilize the best medical intervention available today.

In all of our research, we are certain that having Drew simultaneously implanted is by far the best choice. We also believe that having him implanted as early as possible will only further help him perform optimally with his implants. I contacted Dr. Choo about two weeks ago with our research and desire to have Drew implanted simultaneously. I could tell instantly that he was not comfortable with performing the surgery simultaneously by the long pause following my request. I do not want to push him into doing surgery on my son if he is not comfortable with this new, very aggressive procedure. While Dr. Choo is an excellent, excellent surgeon, he is not as aggressive as we would like in this field. His argument is that we need to see how Drew does with his first implant, and assuming he performs well, Dr. Choo will do a second implant between six months and one year after the first. Because we know Drew's hearing loss was caused by Connexin-26, we are certain that Drew will perform optimally with his implants, since hearing loss is the only trait associated with this genetic disorder. So waiting to have the second implant done in Connexin-26 children is only putting them through another, unnecessary surgical procedure.

In addition, I questioned the time frame that Dr. Choo would like to have Drew implanted. Why are we waiting to implant a child with profound hearing loss that is showing no benefit from his hearing aids? I do not see the need to wait until he is one year old. When I asked Dr. Choo about this, he again he not as aggressive as we would like. He sticks to the 11 month to one year time frame, as approved by the FDA, because there are some risks of additional bleeding with the softer skulls in infants. These risks are minimal and in our minds do not outweigh the need to get Drew hearing as soon as possible.

So we have questioned our decision to go to Cincinnati. And we have questioned why we are questioning ourselves. Just when we think we have made some difficult decisions, we go back to the drawing board and ask, have we made the best decisions for Drew? In this case the answer is "No." So we open doors we have previously closed, and in doing so, we have realized that we may have closed some doors prematurely.

Columbus - We Don't Want to Leave

I feel like my life is in a constant state of fast forward. Between balancing two young children, work, home, doctors appointments, school intervention, family obligations, I hardly have time to sleep (and that has been rare recently, with Drew waking during the night). And just when I think things are about to go back to play mode, something happens that makes me stay in fast forward. For several months now, we have been certain that we were going to have all of Drew's surgery and habilitation done in Cincinnati. Now I believe that Drew will not be implanted in Cincinnati.

I am not sure if I have ever fully explained why we felt the need originally to search for surgeons and habilitation outside of Columbus. We have learned that there are three main areas to consider when deciding where to have Drew implanted: the cochlear implant surgeon, the audiology program and the oral deaf education school connected to the implant program. These three pieces of the puzzle will have to come together perfectly in order for Drew to receive the maximum benefit from his cochlear implants, and to reach our goal of having him mainstream at kindergarten with his hearing peers. These are the three things we are continuously investigating at area implant centers, and as we continue to do research, Columbus Children's just may offer the best for Drew after all.

Over the next several posts, I will try to explain why we initially felt Columbus could not provide Drew the best in each of these areas, and why we are starting to think that we made a premature decision. We are trying to make the absolute best decision we can for Drew, so while we think we have made excellent decisions for him to date, we will continue gather information and when needed we will rethink our decisions. We have no regret in changing our minds at any point along this journey. Our only objective is to do what is best for our son, and we feel confidant that the decisions we have made in the last few weeks are in Drew's best interest.