1/16 A Nice Day, Mostly
Josie made some great progress with physical therapy today. This was the first time she’s walked on her own without holding onto a hand or rail or chair or anything. She went about 10 difficult and uncomfortable feet but she did it. Her strength is slowly returning and that’s nothing but good news.
Her fever continued today but a little lower at around or less than 100°. Still searching for the answer. No therapeutic antibiotics for a few days now so it’s likely not a bug. Could be a fever brought on by a drug or drug cocktail. Same thing could be happening with her liver. Those liver levels are still high with no trend in the right direction. Her distended belly is just uncomfortable to look at, and I can only imagine what it must feel like to live with it.
We’d like to talk about doing away with some of her medication and/or make changes to her regimen. It’s simply staggering how many and the amount of drugs she’s had over the last 18 months and especially since August when we arrived. There were no issues with her liver when we got here or before. Her liver and spleen issues have slowly developed since we’ve been in the hospital. Lots of drugs being filtered by the liver, lots of IV nutrition being filtered by the liver. That liver’s a crazy organ, and a person certainly cannot live without a liver…and Dermatomyositis is not related with liver issues. There is also a slight hunch that the daily Cytoxan she’s been on which is so effective on her Dermatomyositis may be the cause of her liver issues. Therefore, on the thought that drugs may be a suspect, we’re going to shift off the daily Cytoxan and moving to Cellcept.
Cellcept suppresses the immune system and is commonly used as an anti-rejection drug for liver and heart and kidney transplants. Now is the best time we can give Cellcept a go and if it’s not effective with her Dermatomyositis then we’ll shelve it for good, because of several reasons, if it doesn’t work now it’s not going to work at all. We’ll see how it goes.
Also we’re going to see about stopping the preventive dose of Bactrim (a different antibiotic) which she’s been on for months. There’s a risk of infection with this plan, and not all the doc’s are on board with the idea, but it’s worth a try to see if there’ll be some sort of change in her condition.
Still some vomiting, still some tummy pain, but a lot of the day Josie was in a good mood and really fun to play with. Her progress is slow for sure, but encouraging.
Her fever continued today but a little lower at around or less than 100°. Still searching for the answer. No therapeutic antibiotics for a few days now so it’s likely not a bug. Could be a fever brought on by a drug or drug cocktail. Same thing could be happening with her liver. Those liver levels are still high with no trend in the right direction. Her distended belly is just uncomfortable to look at, and I can only imagine what it must feel like to live with it.
We’d like to talk about doing away with some of her medication and/or make changes to her regimen. It’s simply staggering how many and the amount of drugs she’s had over the last 18 months and especially since August when we arrived. There were no issues with her liver when we got here or before. Her liver and spleen issues have slowly developed since we’ve been in the hospital. Lots of drugs being filtered by the liver, lots of IV nutrition being filtered by the liver. That liver’s a crazy organ, and a person certainly cannot live without a liver…and Dermatomyositis is not related with liver issues. There is also a slight hunch that the daily Cytoxan she’s been on which is so effective on her Dermatomyositis may be the cause of her liver issues. Therefore, on the thought that drugs may be a suspect, we’re going to shift off the daily Cytoxan and moving to Cellcept.
Cellcept suppresses the immune system and is commonly used as an anti-rejection drug for liver and heart and kidney transplants. Now is the best time we can give Cellcept a go and if it’s not effective with her Dermatomyositis then we’ll shelve it for good, because of several reasons, if it doesn’t work now it’s not going to work at all. We’ll see how it goes.
Also we’re going to see about stopping the preventive dose of Bactrim (a different antibiotic) which she’s been on for months. There’s a risk of infection with this plan, and not all the doc’s are on board with the idea, but it’s worth a try to see if there’ll be some sort of change in her condition.
Still some vomiting, still some tummy pain, but a lot of the day Josie was in a good mood and really fun to play with. Her progress is slow for sure, but encouraging.
posted by Jay at 10:30 PM
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