Thursday, January 17, 2013

Easton update

I know many people follow this blog to keep up on Easton.  He's causing trouble again.  Big surprise!

About 4 months ago we did a sleep study on Easton and the results were that he has 7 episodes an hour where he briefly quits breathing and o2 levels drop to 85%.  At that time we visited an ENT about removing his tonsils to open up his airway and give him more room to breathe.  His lungs have a hard enough time on their own without having obstructed breathing.  We were told that the risk of surgery for Easton's age, diagnoses and current lung condition was far riskier than the episodes he was having.  A major concern after removing the tonsils was that swelling of the airway can occur and his happens to be floppy... which would just be bad, bad, bad.  I was told to elevate the head of his bed and make him sleep on his belly.  Oh sure, no problem.  Since that day, I have checked on Easton at least 3 times a night (when I say check I mean poke him until he flinches just to be sure he really is breathing) and flip him back to his belly.  Of course he prefers to sleep on his back with his feet in the air.  Crazy animal.

Fast forward to Monday.  I took Easy to his Pulmonary check up and was concerned they were going to up his steroids because he sounds like a purring kitten no matter what I do.  I can give him his rescue inhaler 5x a day and it doesn't go away.  Imagine my surprise when they said his lungs actually sounded clear for basically the first time ever in his life (Gasp!) but the noise was more from the obstructed airway.  His tonsils have doubled in size in 4 months.  They are now a 4 on the tonsil scale and have to be removed and soon!  There was no reason to repeat a sleep study because the results would be at least twice as bad as before and that would only scare me, not help in any way.  Awesome. Guess how much I have slept the last two nights?  Zip.  Zero.  Zilch.  God, I love that boy.

So.. now the challenge is getting someone to do the surgery.  Remember the ENT who told me a few months ago about all the crazy, scary risks involved with operating on someone in Eastons condition? Yeah.  He isn't too hot on this idea.  Don't worry because the Pulmonologist called him and told him there was "no question" that it was happening.  Apparently they hashed it out and agreed that the risks are in fact reversed now and it has to be done as long as the Paediatrician is on board.   Next, the Pulmonolgist meets with her and she has reservations and concerns but agrees its a tough spot but only one answer.  She wants him at Hurley so she can check on him.  I've been told that the Pulomonolgist from Hurley will be well aware of his case, the ICU is right there if we need it and his pediatrician is ready to make decisions after the surgery.  Is it just me or is this the most dramatic scene you've ever heard unfolding over just the DECISION to operate??  I'm feeling overwhelmed and scared to death about this.  I used to be good in hospitals but now I can't stand to hear a monitor beep.  Its like horrific flashbacks of the worst time in my life.  The surgery is scheduled for Jan 31 at Hurley.  He will be staying at least overnight and hopefully he will surprise us all and have ZERO complications and come home.  I pray those little lungs can rally one more time and tolerate being put to sleep and the operation.  Please keep the little fighter in your thoughts and prayers.  I do believe he has been through too much to let tonsils take him down.  We are going to enjoy a nice quick trip to Florida before we tackle these bad boys and hopefully help him to breathe easier once again!

The journey continues...

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