Lucy is still running high fevers and cultures are still negative for any growth. Nobody is all that surprised because the feeling is that it is fungus and fungus can take a while to grow on a culture. We did send off to the lab separate fugal cultures to see if we can’t get some information back sooner than her blood cultures. We are continuing to treat her as if she has a bacterial line infection as well until we have proof that it is otherwise. This means that we are running two separate IV antibiotics, one to cover gram positive bacteria and the other to cover gram negative bacteria, in addition to the six other med infusions we are running. Seriously, she is running a med infusion just about every hour, thank God for the nursing staff. We also started her on an IV antifungal this afternoon to be proactive in treating the fungus if it is indeed a fungus that is reeking havoc on our little one’s body.
Several hours after starting her on IV antifungals Lucy’s fever came down slightly and she perked up for about thirty minutes. Beth came to visit us this afternoon at exactly the moment Lucy perked up. It was amazing to see our girly sit up for a few seconds and talk to us for a shot period of time, she even asked to watch her favorite movie here at the hospital, Cars. Sadly she has not felt any better since that time, she has either moaned in pain or slept for most of the day.
Just after posting this morning we learned that the IV toradol that we were using to help combat Lucy’s pain and fevers was causing her to have a lot of bleeding. She had blood in her stool, g-tube drainage, blood clots coming out her nose, and even vomited blood on several occasions. All of this blood loss means that her counts took a big hit today, this is not good for our girl who is already anemic and in need of a transfusion. We were talking with Dr. R about transfusing her in the next week or two, but it looks like she may need it sooner.
Drew and the kids came by this evening to have dinner. Drew stayed with Lucy and e-filed our taxes… yeah we still have to worry about the everyday stuff of life all the while fighting for our daughter’s life. The kids and I had dinner together in the cafeteria, for them it’s a treat to eat in the cafeteria, for me it’s a treat just being able to spend time with them. We came back to Lucy’s room after dinner and the kids watched a movie together… well Lucy watched the kids watch a movie for a few minutes and then rolled over and went back to sleep. Drew and I commented on how “routine” this has become to all of us.
Tomorrow my in-laws are coming to help with the kids so that Drew can actually go to work on Monday and I can stay here with Lucy. We appreciate all of the offers of help, meals, thoughts, prayers, love, and support …we feel so blessed!