I'm sorry for my absence in blogging this week. Daylon is still in the hospital. He is still vomiting (although today there was marked improvement) and this week they discovered a staph infection in his blood through one of the PIC line ports. He had a head CT that revealed a significant increase in fluid in and around his brain. His most recent hematoma is apparently reeking havoc. He is scheduled to have brain surgery tomorrow morning sometime. They've been working on making sure everyone involved has learned about EB. Dr. Tolar will do his 6 month biopsies following the surgery and also get a biopsy of his tongue (some new questionable sores have popped up and no one knows what they are). To be completely honest, I'm a nervous wreck about the whole thing. They will be drilling a nickel size whole into his skull and have to cut into the vessels that broke and caused the brain bleeds. The amount of pressure (from the fluid) he has may be the source to his vomiting and high blood pressure (he's on 2 meds and one's a drip. They've been 140-160 over 80-100 with the meds. They've upped their game again tonight and it's helping). It's late and I'm rambling, but I just wanted to ask you all ( beg you all really), to pray for Daylon and the surgeons. This surgery also comes with the risk of infection and brain infection is not something you want to mess with. There are so many aspects to think of: the surgeons missing and hitting his brain, his skin not cooperating, infection, Daylon pulling the hose they are going to attach, re-damaging the brain, etc.
We're so very thankful for all of your love and support. I PROMISE I will post something at some point tomorrow. We love you!