The Panthers: Camping With A Side Of Doctors

The few days after Cole's diagnosis were filled with deep grief. I don't think I was able to do much more than lay around for the weekend following that fateful Thursday appointment. There was a lot of extra hugging happening too.

If you ever need a hug, Jack Panther, is the KING of long and meaningful snuggles

One week after Cole's deafness diagnosis, we began our diagnostic journey. Why was he deaf? What happened? Was there something wrong with the shape of his ear canal or ear drum? Was it the cochlea or the auditory nerve?

We were able to get in right away (Aug 6th) to see our friend, Dr. Greg Haveman. Greg and David were good friends in undergrad at George Fox. Greg went on from Fox to attend University of Washington Medical School and then after ENT residency, ended up moving to Walla Walla. It was so helpful to have someone we trust on the front end of this journey. Greg took a look at Cole's ears and everything looked great on the surface. The next step would be getting a CT and possible MRI to see exactly where the problem was happening.

We mentioned that we were interested in possibly heading to Seattle Children's Hospital in the future and he told us to go right away. Sometimes when you get a CT done in a small town, Children's will want it re-done on their own high tech equipment. Transferring care right away would save us an extra procedure. Hooray! Thank you, Dr. Haveman!

He transferred all of our records the same day and we got a call right away from Seattle to schedule our first consult with a surgeon. It just so happened that the scheduler I was speaking with happened to schedule us with a world renown surgeon named Dr. Rubinstein. We knew nothing of him at the time, but God did.

[Cole, do you see how quickly all of these steps happened? It was like God rolled out a golden path with bright road signs, "Walk in this way." It's hard to get appointments with special ear doctors, but God helped us get every single appointment very, very quickly. God is so good.]

Two weeks after seeing Dr. Haveman, we were at the base of Mt. Rainier for our yearly camping trip. We brought two cars on this trip so Cole and I could jaunt over to Seattle for the day on Friday, August 21st for our first Seattle Children's appointment and then back to camping.

Our mountain, 2020

You've just got to represent when you're on the West side. Go Cougs!

After several days of camping and letting the boys be as dirty as they wanted to be, Dave and I did our best to give Cole a wipe down with baby wipes, paying special attention to his dirt packed ears. And then, Cole and I headed off on our adventure to Seattle. You'd think that Mt. Rainier would be a quick drive to the city, but it actually took several hours to reach the hospital. We made it in time and were instantly greeted with easy, free parking and easy access to the hospital. The Oceans building where ENT and the Child Communications Center are located is decorated top to bottom with ocean creatures. There is so much to see on every wall, ceiling, and floor. While many difficult things happen in this place, they have put in every effort to make it a happy place for children.

The check in was fast and within a few minutes we were called back to meet Dr. Susan Norton, the Director of the Cochlear Implant Program at SCH. We had a great interview with her and then were ready for another hearing test. The goal was to confirm the findings of our first hearing screening and get as clear a picture as possible of what he was and was not able to hear. Sure enough. Same results as the first screening.

Red = Right Ear; Blue = Left Ear

8-21-2020

As we were checking in for our second appointment of the day to meet an ENT surgeon, each person we encountered at the front desk and then the nurse who took us back all made comments about how lucky we were to have an appointment with the legend that is Dr. Rubinstein. We didn't choose to be seen by him. It just so happened that he happened to be working this clinic the day we were there. The truth we'd later learn is that Dr. Rubinstein primarily works at the University of Washington and only works at SCH roughly 2 days a month. This was yet another incredible Providence from God.

Our meeting went really well. We learned more about Cole's deafness. If he would have had conductive hearing loss (problems in the outer or middle ear), he would be a candidate for hearing aids. But Cole's deafness was profound sensorineural hearing loss (problems with the inner ear or auditory nerve). Hearing aids wouldn't do anything for him.

Dr. Rubinstein talked through our options going forward:

1) A CROS device which would mean wearing hearing aid like devices in both ears. His deaf ear would have a microphone that would carry the sound over to his hearing ear.

2) A BAHA device which is a bone anchored device which works similarly to the CROS system in that it carries sound from the deaf side to the hearing side, but this one doesn't need hearing aid like devices because the sound travels through the bones of the skull.

3) Only very rarely do they do the third option of cochlear implants. This is a major surgery of implanting a device under the skin that would be paired with a device on the outside to translate sound into electronic pulses to send sound through the auditory nerve on his deaf side. This is the ONLY option that would give Cole directionality of sound. The other two options simply carry sound to his deaf side and wouldn't actually give him the ability to distinguish where sound was coming from.

Cochlear Implants were approved by the FDA for single sided deaf children in the summer of 2019. While the devices have been around for decades, there really is very little research done on single sided deaf (SSD) kids. Our surgeon respected that this was the path we would like to choose as a family and he was ready to walk us through the process.

We left that day with lots of information, special stickers, and a path forward.