The can of worms

Well, I hate worms, especially cans of worms.  We tend to deal with alot of cans of worms around here.  Here we go, opening another one...the throat.   Spencer's stinkin' throat.  It's been the ongoing saga for, oh, I don't know, since he was born!!

Today, I have big throat problems AND a very angry young man to deal with.  We went in for his allergy shots this morning to the Ear Nose Throat Doctor and first of all, they bumped us from seeing our regular doctor to the PA.  I like the PA but he has never seen the kids and it's just so annoying to start all over with the history and hope he 'gets its' which, new guys usually don't until we have seen them a few times.  I was a big bugged with the change because our usual doc has been taking care of this issue for over a year now. 

So, anyways, we mention the fact that Spencer feels like he has a lump in his throat and a fullness that sometimes makes it hard to breathe.  We mention the lack of gag reflex that happened last fall.  We mention the fact that he feels like he is drowning in mucus.  He has always suffered with apnea but he feels like even that is getting worse.  He will wake up in the night gasping for air. 

They decided to scope him this morning while we were there and of course, there is 'nothing' wrong.  My favorite thing in the world is when they say, "Well, everything looks great."  Okay, so why does he feel like his throat is 10 times too small?  I wanted to say, "Just because you think it looks great doesn't mean the problems magically disappear!"  but I didn't.  I just started asking a million questions.  This is not something I can just drop.  It's been over a year for goodness sakes!

Why do I always have to be the sleuth and detective?  When Spencer was a baby, he was born with a condition called laryngomalacia.  Basically, the nerves in his windpipe and larynx were not developed properly and caused the windpipe to collapse when he ate or cried or sometimes, just breathing.  It was scary and he was blue alot from not getting enough air. 

It seems odd to me that he was born with a nerve issue, now he has a gag reflux issue which has to do with the dying of his nerves and now he has this sensation that there is a huge lump in his throat.  It all sounds like a nerve issue...aka mitochondrial disease!  The ENT agreed that it could be a nerve issue that gives him the sensation of his throat closing in.   It could be another nerve dying or the struggling one trying to come back.  In the end, they have no idea but suggests further scope studies and a ct scan to rule out tumors in the soft tissues.  He suggested we do this when we are in Boise in a couple of weeks.  He also doubled his acid reflux medication because there was acid and inflammation all the way up past the larynx on the scope today so that needs to be taken care of.

Ughh....So, we left and Spencer blew up!  He said, "I'm not doing this anymore.  I am refusing all my medication until we see our doctor in Boise.  I am tired of nobody taking me seriously.  I want things to just get super bad so they will finally do something about it and find out the problems instead of guessing and throwing me another pill to take because just maybe it's this, or maybe it's that!  There is something wrong.  I need help!"

I felt so bad.  I don't know how else to help him.  I can't imagine how uncomfortable it must be.  On top of that, he never has a day when he is not sick with gastrointestinal issues.  Never.  I am praying our doctor in Boise will help, actually do something instead of just suggesting another pill.  Spencer is at the end of his rope and I fear that in two weeks, I will be too. 


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