Sunday, July 29, 2012
Despite being on antibiotics for 24 hours Lucy's temperatures have gone up. Her heart rates are elevated (160/170bmp), fever and pain are contributing to this even with all of the anti epileptics that she is taking. These types of meds have a tendency to lower heart rates. I imagine that her heart rates would been even higher if she were not taking these meds. Her blood counts are falling, and even with being neutropenic her WC count is elevated for Lucy. She is in pain, complaining that "she hurts", the pain seems to come in waves. She has this look about her that simply says I don't feel good, I have this look about me that says I am worried. At this point we are hoping for positive cultures. Why, because positive cultures would indicate that this is a line infection, and we CAN treat a line infection. Perhaps one of our biggest fears is that this is viral. Lucy's immune system does not respond appropriately to illness, if you recall last year the flu virus was nearly fatal to Lucy. Lucy's macrophage activation syndrome (MAS) is smoldering inside of her, any illness especially viral illnesses can cause her MAS to flare.
We were admitted to our usual home away from home here at the hospital after spending quite sometime down in the ER. The admitting process is always long, but even longer when your med list is four pages long. Dr. R emailed me while on vacation, "as Dr. Doofenschmirtz would say your timing is impeccable Lucy". I wanted to email him back, I blame you :), every time he leaves town she winds up getting sick.
Drew and the kids came to visit us last night. They brought us all of the things that we need to survive while at the hotel Dupont, dinner, and a new computer...I love my husband. When I asked him how much everything cost he responded, "much cheaper than the insane asylum bill!", eluding to the fact that I will loose my mind if I can't connect with the outside world while living in the hospital.
We are hoping and praying for answers today, and that Lucy starts feeling better soon.