Obviously, no surgery for an EB child is simple surgery, so we just ask that you pray for the IV and intubation process especially. Vanessa and I had to change the bandages on his IV arm today due to some infected wounds. In the process, his IV slipped out, and so he finally had to go down to anesthesiology tonight (after a couple of unsuccessful tries on the floor) to get a new one. Of course, we felt horrible, but the arm HAD to be washed, treated, and rebandaged. There was no other choice. I told Vanessa that EB is all about making the best decision based on what's best and what you know in that moment. Treatments or medical choices are always win/lose with EB, and you just have to choose the lesser of the evils in that moment and take things a step at a time.
They will have to do an art line tomorrow, and the intubation will be tricky. With RDEB there is a lot of scarring, so Anton can't open his mouth very far, so intubation is much tougher. Thankfully, Vanessa says the Anesthesiologist is knowledgable, well prepared, and has done EB children before.
I ask that you pray for renewed strength for Vanessa, as well as peace and courage for all of them. Vanessa has been in the hospital with Anton since Tuesday, and she's just worn out. Please pray for her endurance as she continues down this road. Please pray for the intubation and surgery, but also that Anton will tolerate the g-tube well from the beginning and can handle his feeds. As soon as he shows that he's tolerating feeds okay, he should be able to go home. When Jonah got his, we stayed two nights after surgery, but I guess we'll just have to wait and see with Anton.
As always, thank you for your prayers and for caring so much about our EB Sweeties. We are thankful we are not alone.
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