Family Updates: Part 2.

If you've been following our blog *at all* then you probably know about Kaitlyn and her "coin incident" that we discovered in 2012 and still haunts us to this day.  Flash back to November/December 2018.  Kaitlyn started noticeable have trouble eating again.  Just like before, she was avoiding food, and losing weight (weight she couldn't afford to lose).  I didn't realize how much it was affecting her until her brother (three years younger!) weighed more!  She was back in the first percentile.  Here's the abridged version of our update...

In December, we made an appointment to see our specialist.  With such high demand, the nearest appointment wasn't until January.  Dr. Sutton isn't in practice anymore, and this new doctor didn't seem to believe me.  It wasn't until I pulled up a picture on my phone (FINALLY a good use for Facebook and my history of over-posting), I showed him the diverticulitis pocket we were worried about.  The nurse brought back pages of history and pictures, and we got his attention even more.  He agreed it was worth looking into and scheduled an EGD and dilation.

This happened on January 24th.  The doctor wasn't back there long, but had some news that I guess we prepared ourselves for.  The pocket was bigger and he felt it had to go.  Dr. Sutton had suggested to do this years ago, but it didn't feel right.  However, worrying about Kaitlyn choking all the time and not eating is no way to live either!  For once, we were open to the option of removal.

Early February, we did a swallow study.   Clearly, we could see the pocket now, it's position, and size. We scheduled to meet with the pediatric surgeon.

End of February, we met with the pediatric surgeons to discuss Kaitlyn's problem.  His name was Dr. Short.  After reviewing her history, going over her more recent information, and his own research on similar issues, he also agreed strongly that she needed it removed.

He was the first person to present the risks, however.  The pocket was on the airway side.  They could cut her vocal chords, the airway, a gland in the neck, or worse, she could bleed out if a major artery was nicked.  He suggested we meet with a panel of pediatric surgeons at Primary Children's Hospital to go over their thoughts for Kaitlyn. We left with tears in our eyes, and concern for Kaitlyn.

When the day of March 6th came, we were nervous and ready to find out what they would suggest for our little Kaitlyn.  Meeting with the panel was really different than I expected.  They put us in our own room, and the doctors came in and out, asking questions, looking over charts, and moving on.  It was like being on display at a museum. After quite a few doctors and specialists came through and a long wait, they ALL filed in the room again and gave us their collective feedback.

Everyone agreed that while there is legitimate concern, and this is a risk for Kaitlyn's life, unfortunately, the surgery was much riskier.  Kaitlyn could learn to eat and swallow with a pocket, but if any of the four bad outcomes happened, Kaitlyn's life would never be the same.

We couldn't do it.  We said "no," and we're learning to cope with her way of life.  The panel at would like us to come back next March... but I don't see that happening. Kaitlyn is learning fast, already avoiding the foods we were concerned about, and we'll cross every other bridge when we get to it. We continue to pray for her, but we know Heavenly Father has a plan for her and she is capable of doing hard things.