Friday, March 30, 2012

Boston bound.....

Last Friday, Alexander had his swallow study.  He did great.  The test showed that the muscles in his mouth are not coordinating properly, and every time he would swallow, he would then reflux.  There was also one incident of "penetration" - when he swallowed, it went down his trachea instead of his esophagus.  He was able to get it up without choking, so without the imaging, we wouldn't have known. 

Alex also had a "weird" incident 2 weeks ago.  He attended a field trip to a gymnastics class.  The first thing they did was an obstacle course involving some tumbling and "flips."  Alex really has a problem with being turned upside down, held up in the air, or rapid motion in general.  He was upset after his first turn, but really held it together.  He went through a second time, really struggled after the flips, and by the time he made his way back to me was hysterical.  I was surprised, though, that he couldn't get himself together.  He clung to me crying for the next hour.  When we got home, he wanted to rest and I thought it was because he was just exhausted from the morning.  He didn't eat dinner because his "tummy hurt" - nothing new there.  He went to bed, and soon woke up vomiting.  He vomited for the next 7 hours.  We thought initially it was a stomach bug.  Even though he was terribly sick and couldn't keep even water down, it just didn't seem like it was just a bug.  Long story short(ish), we consulted with his pediatrician about it and he agrees - it wasn't a bug but an underlying medical condition. 

So....lots of doctor conversations later, both his pediatrician and gastroenterologist want him to get a second opinion out in Boston before we proceed with surgery.  All of his doctors and the speech pathologist feel as though he needs the surgery (or something!), but nobody feels 100% comfortable with it just yet.  The only hold up with going out to Boston is getting the insurance company to approve it.  I have a call in to Boston to get him set up with an appointment (because it can be a substantial wait), and his pediatrician will be contacting the insurance company to (hopefully) get approval next week.

That's where we sit at the moment.  It has certainly been a stressful time, lately, but I'm so glad that a decision has been made and we're moving forward.

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