work up

Daylon had another busy day at the hospital. For about 6 hours each day, for apprx. 5 days, we go to the hospital for a series of appointments and tests. Yesterday, we met with a nurse for a history, they drew 13 vials of blood, we attempted an EKG (the tabs were too sticky, so I'm trying to figure out a way we can attach the leads without adhesive), he had a chest X-ray, and I had an appointment with a wound specialist and learned how to properly care for a central line. Today both Caleb and Daylon had appointments, but unfortunately Caleb came down with the flu bug Sadie has. Actually, it's been quiet the epidemic over here. Violet and Daylon are the only ones to not get sick...although, Violet does have the nasty cough. Our Sickies are room bound until the flu leaves. Anyway, Caleb's appointment has been postponed until Friday we think. The schedule is really up in the air. Today we met with a dietitian (who put Daylon on vitamins), our scheduling nurse, Kim (who resembles Monica Potter)and Dr. Miller ( a fellow for Dr. Wagner) and we went over the medicines and their dangers, and a surgeon who will be putting in the central line tomorrow. The surgeon also looked at his G-tube and said that it is leaking too much. The hole for the G-tube is HUGE! Way bigger than the G-tube. He said they probably put in stitches, which he says, really don't work on EB kids because their skin tears and the stitches fall out. The hole will have to stay because the risk of sewing two exposed sides together puts Daylon at risk for secondary infections. He's hoping it will close in 10 days or so. His chemo is tentatively scheduled to start on the 25th, but the hole closing may change that. Tommorow our big thing is surgery for the central line...at 5:30am! :)
Everyone here at the hospital and the Ronald McDonald house are so amazing. So many kind, loving people. We really feel like we're in good hands. Thanks for all the prayers! We are so blessed!