One piece of good news from yesterday that I forgot to mention was that Christine's eye doctor stopped by to remove the contacts! Christine's eyes still need monitoring, but they are looking fantastic. She still gets quite a few drops throughout the day and her eyes often feel dry, but she is much more comfortable without the contacts.
Today has been a busy day with some not so good news. The first cells craping from the new sores in her mouth was inconclusive because they didn't take enough, so Derm had to come back this morning and take new scrapings. This was unbearably painful for Christine. That test for the HSV1 virus came back negative, so the new sores are NOT from a viral outbreak. This means that they are in fact a new flare of the SJS reaction that her body was originally experiencing. From our understanding, this isn't a NEW thing, it just means that the inflammatory response and skin effects of SJS weren't "finished" and so the reduction in steroids allowed the new sores to develop.
We luckily don't see anything on her skin or in her eyes, and they gave her 30 mg of steroids today (they had dropped her to 10) as a "booster" and they will give her 20 mg tomorrow and see if that stops the ulcers from getting worse. They do seem to be worse in her mouth today, and have all become very bloody and painful. We are now back to a waiting game there, because right now her mouth doesn't show signs of healing. The "pain doctors" have changed her regimen a bit, giving her oral oxycontin in addition to the "clicker doses" that she can give herself of morphine with the PCA. This is different from before, when she had a continual PCA dose of morphine plus her clicker does. They have her on the O2 monitor again just because the higher dose of pain meds has the risk of reducing her respiration drive.
Also, I never updated on her hematic blood count that we mentioned from the other day. It went back up a tiny bit after the first observed drop, and they actually looked at her levels from some blood work she had done a month ago and found the value to be about the same as back then, even though it was higher the first days in the hospital. The concern with the lower level is that it COULD indicate an internal bleed, so they took a stool sample to look for blood. They found blood in the stool, but its still unclear whether that is from a slow internal bleed or whether that's just because she has so much bleeding in her mouth that she swallows. I don't know much more than this right now, but I will be sure to post an update on this topic if we learn anything new.
Earlier in the week there was discussion of her maybe being discharged on Friday, but with the new developments over the last 24 hours this clearly won't be happening. Christine has been feeling pretty down and discouraged today with the setback and the new source of pain and discomfort... so keep your comments and support coming! I can't even believe how many people are out there cheering her on, she's so lucky to have all of you. This blog has received nearly 6,000 page views!!
