month 20: more surprises


After arriving for Silas’s scheduled surgery to explore his pinkie finger and place PE tubes, his ENT doctor decided it would be a good time to perform a bronchoscopy of his airway.  Over the last several months, he has had numerous amounts of “colds” and respiratory issues involving coughing, hacking and congestion.  We have really just considered this a normal thing for Silas; much like anything else he does that is completely different from most kids.  (I don’t want to say “normal” kids, because Silas is a normal kid.  He does, however, have a syndrome that sets him apart from his peers in more ways than a person could assume by looking at him).  We never expect things from him as far as that pediatrician checklist you go through at each 6 month checkup, but by watching him and learning along with him, he has developed a speed and instinct for things in his own unique way; we know our Silas.  Or so we thought.

After the surgery, and after Silas’s really unnerving episode of a fever and keeping his heart rate and o2 saturation under control, we finally were able to speak with his ENT doctor about the results from the scope.  After 20 months of thinking everything dealing with his throat and airway were in the clear, we learn that he actually has something called a Type 2 Laryngeal Cleft.  The trachea and esophagus are separate from each other for the most important reason; to keep food out of the airway.  The larynx sits at the top of the trachea.  A laryngeal cleft is an opening in the larynx, or voice box that allows food to pass from the esophagus in to the airway.  The result of this has caused a lot of issues with Silas that we had always thought to be simply a typical Silas thing, such as: noisy breathing (stridor), coughing and choking with feeds, hoarseness, frequent respiratory infections, aspiration to the lungs, and GERD or reflux disease.  WOW!  There aren’t words.  I feel speechless.  I am just so confused as to how this took so long to find?  I never had heard of this before, and apparently CHARGE Syndrome is one of a few leading causes of laryngeal clefts.  Out of all my research, this one never struck my thoughts.  Now that we know this is something he has been dealing with, I am seeing it everywhere.  It is a very rare disorder that occurs in .1 percent of the population.

Over time, eventually, he will need to have surgery to repair this.  His ENT doesn’t think right now is the best time to put him through this type of surgery, as invasive as it will be.  Considering how he did not handle his last recovery from surgery very well, she thinks this surgery would risk him being hospitalized for a lengthier stay than just a night.  And then there is Boston Children’s Hospital, which is the first place in the world to have performed this surgery, and only place that uses a minimally invasive technique.  Their technique is used with a robot that goes through the oral cavity to make the repairs needed.  I am still trying to side on my research and receive quotes through insurance but thanks to my sister, I at least know this exists.

Over the past two years, I have felt really lucky to be surrounded by so many supportive and uplifting people.  This is my walk of life now, and I have peace with that.  I have accepted this and the road ahead as my normal.  I want to thank those of you who still help me by asking questions and being involved.  Though I know most people don’t share their “normal” on social media to the extent that I do, I want you to know that this really helps me navigate this path.  Being able to share with you and write out my thoughts has been my way of coping with my normal.  It also has been my way of supporting Silas’s condition and creating a supportive community for him.  Thanks for praying through his procedures and praying over his victories.  He makes me so proud and has helped me appreciate things in a different light.  I feel so appreciative over things I never gave much thought to before; like walking, talking, eating, rising above and just simply chasing the challenges.  Silas does it with so much grace, Carson too.  I am learning so much through watching them both.

We have really always assumed the new discoveries would be the norm.  It has been.  It hasn’t been heartbreaking or devastating.  He doesn’t have cancer, or a progressive disease that we know of.  He is growing and thriving, just on a different course at a different speed.  That doesn’t mean it hasn’t been challenging.  Of course we all deal with challenges in life.  I never assumed that my greatest challenge would come in the form of my child, but it has been a positive change in my life that I find great peace with.  Once again, my child is different, but he is not anyone to feel sorry for.  He is so special, and wonderful, and so full of all the good things I imagine a child to be full of.  He is an amazing blessing to all of us.

This was to update anyone who has been asking, and to give thanks to those of you who make this easy for us through your love and care!  I care so deeply for each of you, even if I don’t tell you that enough.

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