Thursday, December 20, 2018

Where do we go from here?

We thought Wednesday would be a day to plan with Caleb's ENT surgeon.  I thrive with plans, concrete evidence, educated predictions, and expert recommendations.  Instead, on Wednesday we were greeted with the words: "This may not turn out the way any of us had hoped."

Apparently the tissue that the surgeon encountered on Friday during Caleb's unsuccessful ear tube surgery was unrecognizable to him.  He wasn't sure if the swelling was caused by an allergic reaction to the packing material that they used after Caleb's first surgery or if it's some kind of unhealthy tissue (cholesteatoma) like Caleb had had in his outer ear (although he said it didn't look like any cholesteatoma he's ever encountered).

According to the surgeon our best option is to wait 6-8 weeks and take a look at the left ear again to see if the inflammation has gone down.  In the meantime, he thought a referral would be in order to check with another ENT for a second opinion.  This of all the things we talked about was the most discouraging to me. This other ENT doesn't have any special training that our current surgeon is lacking.  He is just another set of eyes and ears who might have a new idea or just confirm the path that we are already on.  As a mom, that makes me feel like our current doctor feels tapped by the puzzle of healing my son's hearing.

Caleb was tested to see if hearing aids would be a good temporary option.  While he is on the border of needing them, his current small classroom situation made the audiologist and the surgeon opt out of the hearing aids. 

So what does all that mean?  Well, no swimming :-( and very careful showering as we do not want any new infection to take up residence in his already unstable ears.  It's looking more and more like any future surgical options may be over the spring and summer (hear: baseball season) so Caleb has to grapple with the reality that he might only be able to train with a team and not actually play in a game. And David and I need to make a decision about a second opinion.  We trust our surgeon, but the fact that he wants us to get a second opinion makes us wonder if more information would be helpful. 

I'm not worried about Caleb's schoolwork.  I'm not worried that he'll fall behind, but I do worry about how I see him retreating from people because it's work to focus and really listen to other people.  I'm concerned that he seems more and more able to tune everything else out and read while he used to be so quick to jump into the activities that were going on in our home.

My prayer requests are:

  • wisdom for David and me to know next steps
  • character growth for Caleb, that he will grow in being attentive, compassionate, and loving through this trial
  • HEALING for his ears, resolution to the inflammation
And in the midst of all this, our hearts really are at peace, which shocks me because WE HAVE NO PLAN!  For those of you who know me personally, you understand how amazing that truly is.  And thank you!  Thanks for the texts, the emails, the calls, and the face-to-face "How's it goings??"  We know we are blessed to live in a community that truly cares!

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