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!

Monday, December 17, 2018

Quick Update

There are Christmas cards to write, clean sheets to go on a bed, gifts to be wrapped, and kids to be picked up from school soon; but I wanted to update the friends and family who have been so faithful in prayer for our family, especially for Caleb.

Last Friday, Caleb and I went to the hospital for him to receive an ear tube in his left ear (the ear that had undergone surgery already).  The new eardrum had unfortunately not stood up well to the poor pressure from Caleb's Eustachian tubes and was already retracting into his inner ear.  To equalize this pressure, the surgeon wanted to place an ear tube.  This is a quick, easy surgery that takes about 10 minutes.  Unless, you're Caleb.

The surgeon came out of the operating room after 20 minutes and said that Caleb was not hearing well due to a build up of scar tissue in his ear.  The scar tissue also prevented him from inserting the tube in the ear drum to equalize the pressure.  The way forward?  Another identical surgery to the one he went through in September. Plus, two weeks of recovery time after the surgery is redone to remove some of the scar tissue and give the eardrum room to respond to sound.

Caleb was devastated when I told him and we are not excited about this either, but we're trusting the Lord and hoping that something redemptively beautiful will come of this harder road we are on.  On Wednesday, the surgeon will make a plan with Caleb and me as to how we go forward.  For starters, he said that Caleb has a lot of inflammation in the ear that needs to go down before a future surgery so we're looking at 2 months without surgery to begin with.

With eternity in mind but a 10 year old's heart before me, I'm selfishly hoping that we can get the left ear's surgery done well before baseball season and that we can find some way to allow Caleb to swim this summer.  Regardless of whether or not this happens, would you pray that our responses (Dave's, mine, Caleb's) reflect the hope that we have in Jesus?  That, in light of eternity, the next year or so of treatment is but a breath.

In other family news, Ben continues to plug away at his vision therapy.  We now make weekly trips to Fort Wayne Monday evenings for a meeting with his therapist to go over the week's exercises and learn how to do the next week's exercises.  Every morning Ben does 20 minutes of infant reflex, vision focus, and depth perception exercises before even leaving for school.  He has had SUCH a good attitude, and I'm grateful for the discipline of spending this one-on-one time with my son both daily and weekly.

In all these things, we feel pressed but not crushed, and I know that is due in large part to the prayers of God's people for strength, grace, and joy in each new day.  We love you!  And thanks for taking time the time to read and remember us.  It means so much!