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Saturday, March 19, 2011

PICU- Day 2

Here where are almost 24 hours later and he is doing as well as he could be considering everything.  His heart rate has been stable all day, same with this O2 levels and respiratory rate and he has some leakage around his tube which is a good thing; it means the swelling is starting to go down!  Right now its a wait and see game.  No one is real sure when it will be the right time to exubate him.  There are small things they can do to see if is able to breath on his own again.  But if they pull the tube too soon his airway could collapse again; if they wait too long it could cause more damage to his upper airway.  We could scope his airway to get a better idea of what is going on down there, but we run the risk of causing more damage from the scope itself.  So it's a wait and see game right now.

I know many of you are shocked to read someone with simplex has airway issues..well it can happen.  Apparently it happens in about 5% of those with EBS-DM.  And we seem to be the not so lucky ones. 

The airways of babies are so small to begin with, and when you add blisters and inflammation it turns into a bad situation real quick.  Thankfully we caught this quickly with Joey instead of too late with Garrett.  The doctor feels that if no other complications arise, Joey should make a full recovery, but we still have a long road a head of us.  There is also a chance this could happen again at some point in the future.  We hope it never does, but until he is older and has a bigger airway there is always a chance.  We have talked about having a trach placed (a breathing tube that is surgically placed in the front of the throat, but the doctor wants to use that as last resort. 

So that is pretty much where we are at the point.  Tomorrow is Summer's birthday party and as long as Joey is still stable, Joe will stay at the hospital with him and I'll be at Summer's party.  It's only for a couple of hours so things should be ok here during that time.

thank you for all your thoughts and prayers!  We truly appreciate it!


  1. Thinking about you all the time, hoping he will recover soon. Hugs from Jenny and Natalie

  2. Dear Sara: You know that we are all still praying for your precious son. Hoping that the doctors can figure out a safe way to treat your Joey. Hang in there. Keep the Faith. Love and Peace Leah's Nana