"She needs a mastoidectomy," the doctor told me.
"What?" I said, holding my trembling girl.
"Her mastoid bones need to come out or she'll eventually be deaf."
Deaf? Mastoid bones?
What?
She had struggled with infection, after infection, after infection. Some were so bad, I could smell them and fluid would ooze out. We tried everything. Drops. Oral antibiotics. Nothing worked.
I went home and googled mastoidectomy. It was a six hour surgery. And the surgeon would literally drill her mastoid bones out of her skull. All of this in a last attempt to get the infection the was slowly going from her ears and creeping towards her brain. But there were some serious risks.
Complete deafness.
Facial paralysis.
Death.
I took the Princess for a second and third opinion. They all looked at her CT and said the same thing. Mastodectomy. Or the infection would slowly steal her hearing.
I got on my knees and pleaded for my little girl. How could she need this, too? How? She had already suffered so much, endured more than any other person I knew, and yet now she could be facing deafness.
So on April 9, we took her back to the hospital, and once again handed her over to the surgeon. Six hours later we were back by her side.
She was confused, agitated, and downright mad. Her ears had been literally cut away from her head and stitched back together, her ear canal was widened, she was once again assaulted with a scalpel.
We were told to expect her to be out of school for an entire month. But one week post surgery, she was doing so well her ENT allowed her to go back to school.
God has this funny way of reminding me of his faithfulness. Yes, she had to endure another surgery. But he gave us a surgeon, who happened to just have completed years of research on Asian ears. But beyond that, her hearing will never be perfect, but she is healing and she has functional hearing.
My girl's physical healing has stumped even the best surgeons. Her heart looks like it was done by the best surgeons in the US. Her palate is now beautiful. Her ears now work.
I love the song when the Hurt and the Healer Collide by Mercy Me. It just reminds me that when I allow God to take over her life. When I give her to him completely, he will always, always answer. Maybe not the answer I wanted. Because, let's face it, I would have waved my magic wand and taken away all the infection without surgery.
But faith does not work that way. God has bigger plans. Better plans. And he continues to collide with my girl. And continues to remind me that he will not leave her.
Bless you both for all you have been going through! Wow! I know how I felt watching SJ go through open heart~ I could hardly stand it! SO thankful for that precious smile in the last photo!!! LOVE her name. We are naming our new little girl EvieClaire. Blessings!
ReplyDeleteMy son, also born with TOF and cl/cp, is deaf in one ear. His ears were so badly infected when we met him in China they stunk BADLY. I mean people would be in the same room and wonder aloud "what is that smell" not knowing it was coming from our sweet little boy. I had never smelled anything so bad really.
ReplyDeleteAnyway, we looked into this but for our son, it wouldn't have helped. He has major malformations in his left ear and then his right is formed correctly but still some loss of hearing. He has a BAHA now and it has helped tremendously. He also isn't battling the infections anymore since tubes thankfully.
Our son also has canal stenosis. I haven't been to your blog in a long time and didn't know about your book. Can't wait to check it out!
Probably don't remember me but we talked back and forth a few years ago as we were one of only a few back then I knew of adopting children with both CHDs and cl/cp.
thanks for sharing here, Leslie
Leslie--YES! I remember you. I am so happy that the tubes helped your son. It's so nice to be infection free. Evie hasn't complained about her ears hurting since the surgery. Thanks for stopping by!
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