Day +31: the roller coaster ride continues

Dr. Horn took over as the attending physician this week. She gave Mina Brigitta a thorough exam this morning, and then pronounced that she had Grade 4, i.e., life-threatening GVHD. That news hit pretty hard, even though we knew it wasn't based on any change in her condition, just on the assessment of a new doctor. However, she went on to say that Mina Brigitta was a good Grade 4, almost 4-, because she's very stable and doesn't have any signs of organ failure. She also said her skin rash doesn't really look typical of GVH, although the one thing about GVH is that it can present in a number of different ways. Still, she arranged for visits from a dermatologist and infectious disease specialist.

We were quite low after hearing Dr. Horn's assessment, and also because Mina Brigitta seems worse in some ways today. She was only awake for a few minutes at a time, and she fevers in the morning and in the evening. Her face is so puffy she can barely open her eyes, and the rash has moved all the way down her arms and become quite red. On the other hand, she went seven hours today without a bowel movement, and her total stool output was much lower. And when she did have a stool, she didn't seem like she was in nearly as much pain as yesterday and the day before. But then at about 5 PM she threw up a huge volume of greenish liquid, so Dr. Horn began to get worried about an obstruction in her bowels. The X-ray looked fine, thankfully.

The most interesting visit was from the dermatologists. A fellow and a resident came by looked her over very carefully, and then left the room to confer. Their manner was jovial at first as they remembered seeing her before, but turned very serious when they began to examine her. After being gone for half an hour or so, they came back in and the dermatologist informed us of his opinion that the rash isn't GVH at all, but a drug reaction! His leading candidate is the Septra, also known as Sulfatrim, that she takes on weekends to prevent a specific type of pneumonia that can occur in the immuno-suppressed. But they recommended immediately stopping all antibiotics, despite her continued fevers. They took a core sample of skin from her back to send for a biopsy. They had to go about a centimeter deep to get a sample of all the layers of skin. The process was somewhat like digging a post-hole. They gave her a shot of a local anasthetic, and were very impressed with how well our brave little girl tolerated the procedure.

Now we were quite high with the possibility that this isn't Grade 4 GVH (a very bad thing), but is instead a severe drug reaction (a sort-of bad thing). However, the next visit was from the infectious disease (ID) fellow, who thought the rash looked like GVH. We got another visit from an ID attending, who came into the hospital at 9 PM on Memorial Day just to look at our girl. Her comment was that it was a very unusual rash, one that she can't immediately associate with any particular cause. So they're going to send a whole bunch of virus studies to see if anything turns up positive. Her rash isn't typical for any particular virus, but she isn't a typical host because of her immuno suppression, so things can present differently.

So the bad news is, we still don't really know what we're dealing with or how serious it is. The good news is, it's suddenly possible that it's something much less serious than GVH. The skin biopsy should be back on Wednesday, and this time they think it will tell us for sure whether or not it's GVH. Keri and I are exhausted after everything that happened today, but bouyed by the new possibilities. We'll be anxiously awaiting the results of the biopsy.