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Tuesday, March 22, 2011

PICU-Day 5

Well folks, we have a lot to share with you!

Joe stayed with Joey last night and he gave everyone quite a scare (in a good way).  He decided to wake up on his own!  He started moving his arms and legs and mouth and making noises.  Normally that is  good thing, but when you have a tube down your airway all that moving around isn't a good thing!  So now he is on a double dose of the paralytic medicine!

This morning x-ray was a little better than yesterday and all blood cultures came back negative!  So he is off the antibiotics. He still has a lot of mucus and fluid on his lungs- mostly from laying in his back for the past 5 days and getting IV fluids, so he got his first dose of lasix today.  Since then he has been peeing LOTS:)

The plan at rounds today was to get an ENT and pediatric surgeon consult sometime today or tomorrow.

Late this afternoon the ENT came up (I wasn't here but Joe was).  He has dealt with EB before and the plan now is to go into the OR on Thursday, remove the tube from his airway, scope his entire airway to see what is going on there.  If there is just a lot of mucus and gunk then he'll clean it out and see how he does.  If there is still a lot of inflammation and/or blisters then he will trach Joey. 

If they trach him, then the pediatric surgeon will place a g-tube (a mickey button) at the same time.  The surgeon has EB experience (locally too!). But if they don't trach then no g-tube.  But that is ok.  We are fine with this plan.  Neither the g-tube or trach are 100% permanent (though we do know they could be)  we just want him alive.  His skin and airway should heal over time and there is no reason to think he won't turn out just like Sami.  We just need to get past this point, and if its a trach that will get us past this point, then that is what we will do.

Because of the possible g-tube, he will need to have a barium swallow and that is scheduled for sometime tomorrow morning.  We don't have a time for surgery yet but hopefully tomorrow we will know more. 

Tonight he is keeping his nurses on their toes...alarms keeping going off..O2 levels going up and down (too much fluid on his lungs needs more laxis)

hopefully I can get some sleep tonight with all these alarms going off!

On another note, Summer had her 5 yr well visit today...50 pounds and 45 1/2 inches tall!  She also got 4 shots...and is not very happy with me right now.  But she doesn't need anymore till she is 11! However, she could care less about that part.

Good night all!


  1. He's def up for the fight! Go Joey giving daddy a heart attack so early in life!!!! =) XOXO Thinking and praying for you all!!!

  2. Dear Sara: I love the way your attitude is so so positive. I think that is why so many people care about you and your family.
    We will continue the prayers for precious Joey. He sounds like quite a little fighter. I think he might take after his very special Mommy and Daddy.
    Praying for you guys. Keep the Faith. Love and Peace Leah's Nana