As some of you know, Susie’s routine well-child exam turned up a “funny looking” right ear drum and failed hearing test, and after a course of antibiotics and a recheck, Dr. Vallance sent us to an ENT. One look, and he referred us to the House Ear Institute in downtown LA, suspecting a cholesteatoma, which is a benign growth of extra skin.
We had our appointments today. Susie did an extensive set of hearing tests with an audiologist, and her left ear is perfect but her right ear is indeed experiencing conductive hearing loss. There is no problem with the nerves, and all the hearing loss is a result of extra tissue in the ear. Then we saw Dr. Luxford, who immediately diagnosed it as a congenital cholesteatoma. He showed it to us through the microscope up on the tv, and the growth is very noticeable and wrong looking, even to my untrained eye. It’s serious and needs to be dealt with asap before more damage is done. She will need at least two surgeries, 9-12 months apart, to fix this. The first one, a tympanoplasty with mastoidectomy, will clear out all of the cyst from her middle ear and probably remove 1-2 of her little ear bones (which are surrounded by the cholesteatoma) as well as her current ear drum, then create a skin graft for a new ear drum. The second surgery will hopefully establish that the growth has not returned, clean it out if it has, and then he’ll do reconstructive work to replace the little bones she has lost. Her hearing will be just as bad or worse between the two surgeries but will hopefully be completely restored with the second one. Sometimes if the disease comes back or there are complications, we could be looking at 3 or 4 surgeries. With the surgery, there is a 1% risk of a lot of scary sounding things, from dizziness or nausea to permanent hearing loss and facial paralysis, but there is 100% risk of those things happening if this is allowed to continue to grow and destroy all the bones in her inner ear and start affecting facial nerves and such. He said we were welcome to go get a second or third opinion, but this is an absolutely necessary surgery, the sooner, the better. Our appointments ran so late that the office staff had left before we got out, but I’ll be calling to schedule the surgery tomorrow morning. We should be able to get it in before we leave, and this surgeon knows a good ear specialist in Iowa City who would be able to do any monitoring care if it’s necessary while we’re there this fall. The surgery is outpatient at St. Vincent’s downtown, and though she’ll be under general anesthesia, the turnaround time to normal activities is usually 5 days. She won’t be able to swim for 3 months, so it’s a good time to move away from the beach for a semester!
The two hardest things for me today were sitting in on the hearing test, watching Susie not hear or respond to words that I myself could hear, and when the doctor talked about removing bones from her body. She is six years old and 37 pounds! I did not break down in front of her either time, and I have actually not cried at all yet. She is a bit subdued but was matter-of-fact when she told her sisters about it tonight.
Because God is in control, we’ve had an amazing number of “coincidences” with all of this. We had not noticed any symptoms yet, but because of the kids’ long, weird viruses this spring, Dr. Vallance just happened to do an extra good clean out of Susie’s ear at her check-up, suspecting secondary ear infection, and noticed it. The ENT just happened to have an opening that same day and was able to diagnose it and refer us to the House Clinic right away. Tonight, our high school babysitter came over to babysit when we got home from the doctor so that Derek and I could go out for dinner and talk without the kids. Turns out Jennifer’s brother just happened to have a cholesteatoma, too, so her family knows all about this exact kind of ear surgery. They live here on campus, so I’m going to talk to her mom about this all tomorrow. And gosh, when I was gnashing my teeth, impatiently wanting a foster placement, God was graciously delaying our certification so that we don’t have a traumatized foster kiddo in the midst of all this craziness. God is sovereign over every aspect of our family’s life and health, and we trust Him with Susanna.
Wow Emily! This is a lot of weighty news that ends with so much of God’s clear providence that my heart is mighty encouraged! Praise the Lord for his hand on Susie and you and the whole family and even the move and foster care!
What a big smile Susie has on her face in this picture! A bigger smile than in most pictures! Susie’s spunkiness and determination may serve herself and you well through these surgeries and recoveries. That surgical appointment was a lot to take in as a parent. Happy to hear you have connection nearby who have walked a similar road!