Never a dull moment

A lot has happened since my last post. We had a great time at the Jones' house having dinner and watching UT. Around 8:30 Melissa and I notice that James Thomas was starting to break out into a rash. His entire chest, neck, and face was and still is covered in hives. I started freaking out, thinking any minute his throat was going to close up. We spend the second half of the game on the phone with Anna (Melissa's sister who is a nurse), the on call doctor at Blue Fish Pediatrics, and the on call Hematologist at Texas Children's. They all say the same thing to give him benadry and watch him closely. If he starts showing any signs of difficulty breathing head straight to the ER. I am stressed out of mind just waiting for James Thomas to gasp for air or start coughing. SO, James Thomas ends of sleeping with James and I so that I can monitor him and give him another dose of benadrly at 3:30 am. This morning I realize he is not going to stop breathing on me but he still has a bad rash that is bright red and not going away. I call Blue Fish and head up there for a 9:45 appointment with Dr. Pielop. What was I thinking when I said we might get a break from the doctors??? Oh well, at least he is ok going into the weekend. They realized that he was allergic to the betadine that they pour all over them before surgery. I have to give Melissa's sister a shout out because she guessed the betadine the second she saw him. It is nice to have an on call nurse 24/7 with Anna. He is doing o.k. today, a little fussy but that could be soreness from the port. Below are some pictures from last night! Melissa has always said EB babies can turn on a dime and that is why there is always a constant stress. I saw that happen first hand last night with James Thomas and it is scary! Have a great weekend and so sad UT lost!



     JT in his new tub night before surgery.
    Rash James Thomas got from betadine.
The heart bandage covers his port!
Luke waiting for the game to start!!
       The Garretts cheering on Texas!