A new Derm resident came by and asked a bunch of questions, looked Christine over head to toe. She agreed that there looked to be new outbreaks on the skin, and took some pictures. She talked with Christine's normal Derm attending on the phone, and shared the pictures. All teams seem to agree that it can't be the antibiotics because the timeline just isn't right - they say it usually takes on the order of weeks for the body to develop the sort of immune response Christine is experiencing. They don't want to take her off the cipro "just to be safe" because its really important for her UTI and they don't want to switch it to a different antibiotic because introducing yet another new drug has its own set of concerns. In the end, the decision of the day was to increase her daily steroid dose by about 3.5 times and continue the cipro antibiotic. Derm and the other doctors seem to think its much more likely that the new outbreak is because the immune response kicked back in as soon as the steroids decreased, rather than this being a separate and new SJS outbreak from another med (which I guess just doesn't happen). What they are saying makes sense, but its still incredibly scary to see this happening all over again. We can only hope that the extent of the inflammation isn't as bad as it was the first time around given the ongoing steroid doses... Her eyes were bothering her more this evening, which certainly generates a bit of concern.
While she is still in a lot of pain, the changes to her pain meds that they made today seems to have made a big difference in terms of the nausea she felt yesterday, so that was a bonus. Molly and her boyfriend visited for awhile in the afternoon, and brought her some ice cream. She has discovered that sweet potatoes are a go, and so had some sweet potatoes, left over spinach ravioli, and french fries for lunch. Later in the afternoon Sam and Katie came by to visit, and Christine had a bit of a breakdown. She cried for close to an hour, just feeling really down about how sucky the whole situation is. She has been in pain for three weeks now, her pain has never been below a 6 on a scale of 1-10 since she has been hospitalized. She can't eat normal foods, its tiring and painful for her to walk, she is sick of being in the hospital, and just after things were starting to look up everything started all over again. I'd say this girl is entitled to a breakdown. That didn't make it any easier to watch, because there wasn't really anything we could say that would make it better. We can't tell her how much more of this she will have to endure, or how long she will have to wait until she can do normal things again like run and cuddle with her dog Neo. It certainly does suck and isn't fair that this is happening to her, especially after all she has been through in the past several months from life in general. My sister is one strong girl, but she has been dealt a rough hand. One of the nurses she really liked finally came in and gave her some words of encouragement and french braided her recently washed hair, which helped Christine cheer up.
We all think that Christine has done an amazing job staying strong and positive, but its important to remember how difficult this is for her. There are a lot of positives to hold on to, but sometimes its hard to find them for her and sometimes the ones that seem like positives ("Hey, your skin is looking great!") have turned out not to be true or have been "taken away." Thanks again to everyone for the continued support and encouragement as she struggles through this difficult time in her life.
Saturday, April 27, 2013
April 27th 10:30am
From Christine: Had a little set back. Had a rough night. Cried a lot. Kind of scary.
Well, this post is unfortunately not filled with good or hopeful news. Christine's face is blotchy and inflamed her torso areas are blotchy and inflamed, and she has a new rash area on one of her thighs. It seems clear that this has spread, at least to a minor extent, to her skin. She still has ulcers (and some new ones) in her mouth and on her lips, and she has developed new ulcers in the mucosal areas of her genitals as well (same as before). The eye doctor came by last night to check on her eyes, and luckily there aren't any signs of inflammation there. She has dry eyes and so her eyes feel a bit sandy and she is tearing a lot because her eyes are over compensating for the dryness, but the doc said that her corneas are "pristine". We certainly hope this doesn't change as whatever this relapse is progresses.
We are trying to put our heads together and question the doctors as much as we can about what could be causing the flare. The decreased steroids is still a leading option, but I began to question them about the two antibiotics she has received for the UTI (which is apparently a pseudomonas infection that is a result of being in the hospital, not a typical UTI). One of the antibiotics, ceftriaxone, she received two IV doses of, with the last day being Tuesday (the new mouth sores appeared on Wednesday). The other antibiotic, an oral ciprofloxacin, she began taking 1-2 hours before the mouth flare up. I have found SJS case studies for both antibiotics, but more reports for the ceftriaxone. The doctors seem to think its INCREDIBLY unlikely its the cipro because the timeline is just too short. It's possible its the ceftriaxone, but she isn't taking that now and is on the increased steroids so there wouldn't be any change in treatment if it was. We ran all these questions and ideas by one of the PCPs on her case this morning, and she is going to talk to Derm. They have held off on the cipro so far, but will probably give it to her soon. They don't want her to miss a dose because of the severity of the UTI. The steroids already make her immunosuppressed, and the last thing she needs right now is a kidney infection.
We are waiting on Derm right now to see what they think about the new developments. I'll be here most of the day, Dad is probably coming back down today, Mom and Tommy are in here working/puttering on their laptops, and Christine is napping. Oh, and I forgot to mention the pain meds. They switched her from a PCA (IV administered) morphine drip to an oral oxycontin + morphine "clicker" doses (the ones she can give to herself every 10 min as needed). The oxycontin made her really nauseated yesterday and the day before, which was making her pretty miserable. Anti-nausea medicines weren't helping. Today they are switching her to oral morphine + the clicker morphine as she seems to do OK on this drug. So far she isn't feeling sick and hasn't complained too much about pain... though her mouth is obviously really bothering her.
I'll give another update later today when we know more.
Well, this post is unfortunately not filled with good or hopeful news. Christine's face is blotchy and inflamed her torso areas are blotchy and inflamed, and she has a new rash area on one of her thighs. It seems clear that this has spread, at least to a minor extent, to her skin. She still has ulcers (and some new ones) in her mouth and on her lips, and she has developed new ulcers in the mucosal areas of her genitals as well (same as before). The eye doctor came by last night to check on her eyes, and luckily there aren't any signs of inflammation there. She has dry eyes and so her eyes feel a bit sandy and she is tearing a lot because her eyes are over compensating for the dryness, but the doc said that her corneas are "pristine". We certainly hope this doesn't change as whatever this relapse is progresses.
We are trying to put our heads together and question the doctors as much as we can about what could be causing the flare. The decreased steroids is still a leading option, but I began to question them about the two antibiotics she has received for the UTI (which is apparently a pseudomonas infection that is a result of being in the hospital, not a typical UTI). One of the antibiotics, ceftriaxone, she received two IV doses of, with the last day being Tuesday (the new mouth sores appeared on Wednesday). The other antibiotic, an oral ciprofloxacin, she began taking 1-2 hours before the mouth flare up. I have found SJS case studies for both antibiotics, but more reports for the ceftriaxone. The doctors seem to think its INCREDIBLY unlikely its the cipro because the timeline is just too short. It's possible its the ceftriaxone, but she isn't taking that now and is on the increased steroids so there wouldn't be any change in treatment if it was. We ran all these questions and ideas by one of the PCPs on her case this morning, and she is going to talk to Derm. They have held off on the cipro so far, but will probably give it to her soon. They don't want her to miss a dose because of the severity of the UTI. The steroids already make her immunosuppressed, and the last thing she needs right now is a kidney infection.
We are waiting on Derm right now to see what they think about the new developments. I'll be here most of the day, Dad is probably coming back down today, Mom and Tommy are in here working/puttering on their laptops, and Christine is napping. Oh, and I forgot to mention the pain meds. They switched her from a PCA (IV administered) morphine drip to an oral oxycontin + morphine "clicker" doses (the ones she can give to herself every 10 min as needed). The oxycontin made her really nauseated yesterday and the day before, which was making her pretty miserable. Anti-nausea medicines weren't helping. Today they are switching her to oral morphine + the clicker morphine as she seems to do OK on this drug. So far she isn't feeling sick and hasn't complained too much about pain... though her mouth is obviously really bothering her.
I'll give another update later today when we know more.
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