Today has been long, exhausting and frustrating. Benjamin had a lot of bloodwork done today. The good thing is that his platelets are up and his hemoglobin is up as well. So thats great...but his bilirubin is also up, quite a bit, which means there is still a lot of damage happening to his liver. The nutritionist thought that by now they would have seen a decrease, but that hasn't happened. I'm so scared about the damage the TPN is doing. Tonight they are starting something called cycling. They will increase the amount of TPN he's getting per hour for 18 hours and then shut it off for 6 hours per day. This will hopefully give his liver a chance to heal a little between. His bilirubin may not go down, but hopefully they won't go up. Benjamin is looking so yellow, which makes it so real...we can see that his liver is hurting. Today I sat by Benjamin's and left his stoma open. The air really helped again. The nurses changed him ever 2-3 hours, but it was still red this morning. So we've decided to spend all our time at the bedside making sure he's dry and clean. JOn will be there all night tonight. The nurses just don't have the time to sit there..and its pretty constant...the stool coming out. Its so acidic and watery that it just eats away the new healing tissue. If we have to have 24hr bedside vigils to heal him we will. Once the skin is healed they can put a bag on and increase feeds...increasing feeds will help his liver too. So 2-3 days of round the clock care by us will be worth it in the end. The surgeon was also in the unit today, unfortunately she didn't see us.. We were so hoping we'd get to see her and the nurse was supposed to make sure she would see us, but I guess she didn't. I'm so frustrated... Anyways, I'm hoping that 2 days of constant care will make all the difference. My poor son has been through so much and it breaks my heart. Pray for healing...and pray for strength for us.