I don't want to be out of the room too long so I need to make this one quick and picture less. Daylon did well through the night, with no additional problems. The experimental drug for his VOD (defributide) and dialysis are to blame for the bleeding since they both involve blood thinners. Brian and I decided to take Daylon off the medicine and the doctors agreed. His 21 days would have been up on the 27th so he got a hardy dose and will still see the benefits of the drug. They upped his platelet count to 100 (he was being transfused at 30 before now), so he's been receiving a constant platelet transfusion since midnight last night. The heads of BMT (attending and the EB docs), PICU and Neurosurgery got together and decided to wait on the surgery and watch Daylon closely. The head is a giant surface of bacteria and since they've been pumping him full of immune suppressant drugs and he's an EB kid, his chance for infection is extremely high. Too high to risk it at this point. Daylon was unable to move his right hand last night (from the pressure on the left side of his brain) and starting 3am or so, we saw some finger movement. It's still not any big movement, but at least it's something. The doctors believe his condition is improving. There are three levels he has to go through until he's out of the woods: the first 24 hours, the first 72 hours, with the last level being 3 weeks after the bleeding. Brian and I are so thrilled with the news of being able to avoid surgery. It would be such a risky procedure for him. Looking back, I can really see how the events of last night, although scary, were a real blessing. Had Daylon not had a seizure, we would not have known about the hemorrhaging until it was too late. In the very least he could have suffered permanent brain damage. But since the doctors know, they are able to thicken his blood and try to stop the bleeding. This has been such a great reminder that although we are given trials, we're never alone. There's always something to learn, a greater purpose for our pain. Thank you for your encouraging remarks and all of your wonderful prayers. They've helped Brian and I get through our toughest times.
PS- We owe a HUGE special thanks to:
* Tim (Bella's dad) for camping out at our house last night doing 3am potty runs with the twins and searching for binkies in the dark! We'd have been lost without him! We can't imagine doing this without you guys!!
* Lonni and Jay Moreland for taking all four of our (coherent) crazy kids for the afternoon! Our kids are so psyched to hanging out with their family! I still can't believe they braved the park with them!
It has been so nice for Brian and I to be together with Daylon at the hospital. We're so grateful that we've been able to focus on Daylon and not have to worry about the other kids! Thanks again guys!