Well, today is finally over! Daylon is still adjusting to the time difference and didn't go to bed last night until 1am. I woke up at 3:45am to get us ready for the day. We had to arrive at the hospital at 5:30 am and the surgery was scheduled for 7:30am. The Surgeon placed the central line (no blisters or broken down skin as of yet! Yah!) and examined his g-tube. He said that what he would like to do this week is fill in the hole with a foamy-gel type substance that should help healing time. As of now there is no infection (thank goodness), but he wants to push back the BMT a couple of weeks so as not to risk his well being once the chemo starts. As for the central line, it can't be anchored to his skin so we have to be super careful that it doesn't get pulled out. Honestly, it's a bit nerve racking. So far we're good though! While he was still in the O.R. they came and brought me back. Dr. Tollar (he and Dr. Wagner are the brains behind the trial)and I removed his dressings and a photographer photographed his skin and the procedure. Three dermatologists got right to work, taking 8 skin biopsies (which will be compared to skin biopsies taken in the future to see how is body is actually reacting to the BMT) and performing a blister test. The take a machine the lightly sucks on the skin to form tiny 1mm blisters. For the average person, this should take about 60 minutes. The past EB patients blister anywhere from 5-12 minutes. Daylon was at 5 minutes and 18 seconds. The doctor says that he's right where they expect him to be, so that's good. Anyway, they will also perform the blister test on Caleb when the harvest the bone marrow, and on Brian and I. They expect Brian and I to blister in about 30 minutes. Even though we don't have EB, we carry the gene, therefore, our skin is weaker. The goal is to see Daylon skin blister around our time frame in the future. For the EB parents reading and preparing for BMT, Daylon didn't seem to even notice the blisters. The pain seems minimal, so no worries! Oh, bring lots of Mepitac! Not all Dr.'s here no what it is, more or less carry it.
They let me bandage him while he was still under sedation, so that was wonderful! It was my first time bandaging him alone since he was about 4 months old. He's such a strong little fighter!
Our day was full, but good. It's hard to see yet another object protruding from his small body, but it's important for us to think of the long term goals and keep moving forward. Thank you all for being our support system! We love you!