Once Upon A Prayer

Sunday, September 23, 2012

Mighty Mack's Surgery Consultation

This past Friday, I took Mackenzie to the Georgetown University Hospital for her Cholesteatoma surgery consultation.  Mackenzie's ENT referred us to Dr. Kim, even though Dr. Kim typically only agrees to operate on adults.  The difficulty that we discovered while trying to find a surgeon for Mackenzie's surgery is that the Neurotologists who operate on children have never seen a Cholesteatoma as severe as Mackenzie's in a child.  So the choice was up to Jacques and I as to whether we trust a Pediatric Neurotologist who had never operated on a child with such a severe Cholesteatoma, or did we trust a Neurotlogist that had experience with severe Cholesteatomas but did not operate on children.  This proved to be a very difficult decision for us.  One that was bathed in lots of prayer.  I was hoping that during this consultation on Friday, God would make it perfectly clear the direction we should pursue.  And he did! 

Dr. Kim spent an hour and a half showing me diagrams, and Mackenzie's CAT Scan while going into detail about how he would perform the Cholesteatoma surgery.  I told him to please be honest with me about everything, and to not sugar coat anything.  I did really well until he told me that he felt Mackenzie had completely lost all hearing in her left ear already.  Even though it is outside of my typical character to be an eternal optimist, I really felt that he would tell us that he could save some of her hearing in her left ear by reconstructing the broken bones in her inner ear.  Instead, he spoke about how he would more than likely close off Mackenzie's left ear canal to help prevent future Cholesteatomas from forming.  Even with this drastic surgery, the Cholesteatoma could still come back, but this would lessen the likelihood.  Dr. Kim then told us that since Mackenzie has a gaping hole in her right eardrum, she will need a hearing aide.  This did me in...the tears starting flowing, and poor Dr. Kim didn't really know what to do with me.  Poor man!  Depending upon how well Mackenzie does with the hearing aide, he would wait until she is about 7 years old before patching her eardrum.  Right now, the hole in her eardrum is acting like a drain for any future infection she may get.  Since this is Mackenzie's only "partially hearing" ear, we need to try to save it.  Dr. Kim was very honest, and said that he is amazed at how many words Mackenzie has learned over the past four months given her hearing status.  I explained to him how Jacques and I say words over and over again straight into her face so that she can literally feel the words.  He said to keep up whatever we are doing because it is working!

Dr. Kim took some more swabs of Mackenzie's ear to see what type of bacteria is present.  When we first returned from China, we were told that she had three resistant strains of bacteria in her ear and he wants to see if we are still dealing with the same bacteria or if this has changed.  Mackenzie will have a hearing test completed on Thursday, October 4th.  If she can cooperate well enough then she will not need to be sedated.  Dr. Kim is booked for surgeries in October, but said he will work at freeing up some space since Mackenzie needs emergency surgery.  Mackenzie's Cholesteatoma has perforated her skull and the risk of the bacteria spreading to her brain is high.  If Mackenzie develops a high fever she will be hospitalized and the surgery will need to be done immediately.  Besides her horrible balance, which is a result of the cyst being in her middle ear, we have also noticed that Mackenzie has began to drool a lot lately.  Our prayer is that the Cholesteatoma can be removed as soon as possible, and that no permanent neurological damage has occurred.     

Mackenzie and I ended our physically 
and emotionally exhausting day at lunch!

Our church small group met up at a park on Friday evening.  Since Mackenzie has such bad balance, she constantly falls and walks into things.  Friday night was no exception.  Mighty Mack walked into a metal part of the park jungle gym and got a black eye.  If it were up to me, I would bubble wrap her and not allow her to set foot on the ground until after her surgery.  Good thing Mighty Mack has two parents!

The Lord your God is with you, he is mighty to save.
He will take great delight in you, he will quiet you with his love, 
he will rejoice over you with singing.
Zephaniah 3:17


  1. You all remain in my prayers! Cholesteatoma surgery is very scary. We know....our Kristin had the surgery twice. I pray that the Dr. can get the entire Choldesteatoma out of Mighty Mack so that there is no chance of it growing back. Our Kristin has a hearing loss in her bad ear, but has compensated quite well for 25 years. With good hearing in only one ear, she doesn't localize sound well, so when she was little, I couldn't just call her name, I would have to say where I was, for example, "Kristin, come to the kitchen." I know that God's love for Mackenzie is what brought you to her. He will continue to watch over her.

  2. Oh, Emily...thank God Mighty Mack has your loving family now. And thank God she's even here to feel your love. I am still floored by her condition. God bless her. We will be here praying for both of your little beauties.


  3. Hi,

    I've been thinking about your family a lot these past few days , to the point where I have been praying constantly for your family. You have been placed heavy on my heart. Hope things are ok.

    IM Mom