He did do well during his dressing change tonight, but we're unsure of exactly how much medicine he was on. He threw up his first dose of morphine and Atavan, and had to get more... so knowing exactly how much was in his system is a little difficult. Although there has been some talk of the road to home, we were told today that we're still looking at "several" weeks. They have to ween Jonah off morphine, find some pain medication he can have from home, and get his wounds in better shape to where his pain will be manageable with just Tylenol. This will be a long process involving us letting our support people in on his nightly dressing changes one at a time, "living in" where we take care of Jonah in a suite at the hospital, arranging for a home health care nurse, making sure all our bandaging supplies are lined up etc. before we go home... so we still have a ways to go.
As we were doing his dressing change tonight, I noticed a big lump under his arm pit. He has swollen lymph nodes under both his arm pits and in his groin. His WBC count is up, so the assumption is he probably has an infection. We won't have the results of the blood culture for 2 to 3 days. For now, they are starting him on oral doses of Keflex. Please be in prayer that the oral drugs will be enough to kick this thing - if the blood culture comes back saying he needs some big gun IV antibiotics, we'll be looking at another PICC line of some sort -either in his neck or the broviac. If he has to get the broviac, he will have to be intubated - that is very, very bad considering there is usually tracheal involvement with his kind of EB. NO MORE TUBES! I don't know if the infection might be why he's been so inconsolable. He was also pretty gassy today, and I guess there's still a possibility that he's lactose intolerant (although we've had no indication of that before now). Please pray that we can figure out why he's acted like he's in so much pain and that we can remedy it. I know all you moms (and dads too) know how it feels to know your child is hurting and how completely useless and desperate you feel when you can do NOTHING to make it better. His constant crying was about enough to send me over the edge today. I was in tears myself several times.
Here are some pictures from the last couple days (when he wasn't screaming):