10/1: We Know the Devil...
...his name is Decadron.
We decided Leo needed to be taken to the ER last night. He wasn't eating or drinking and seemed very weak. He also wouldn't or couldn't open his mouth. So at around midnight, I took him to Lutheran General Hospital. Although my cousin Irina had just gotten off work there, she stayed with us until about 5am, after Leo had been moved into a room and 2 unimpressive residents had their way with him.
In the ER, we were first visited by the first-year ER resident, who quickly brought the attending. They tried to pry Leo's mouth open with two tounge depressors, but could hardly do it. Even though he resisted and fought them all the way (good boy), they did shine a light inside and saw thrush. The other thing that happened in the ER was a chest x-ray. Still clear, thankfully, so no pneumonia.
Upstairs, the 2 residents asked a truckload of questions and I sometimes felt like I was teaching them. For example, when I said Leo had a bilateral hernia in 2004, one of them asked, "So, what was done?" It should have been more than obvious that hernia surgery was done. Anyway, they started Leo on electrolytes and we fell asleep at about 6am.
In the morning, Dr. Ruge, a pediatric neurosurgeon, briefly stopped by. He said he looked at Tuesday's MRI, which showed no change from the previous one, and that Leo wasn't really a candidate for brain surgery. Thank G-d. Then came a physical therapist, who was the only person all day to actually help us with something. She evaluated Leo and said the 2 issues he has are weakened muscles throughout and his ankles are very, very stiff. She showed us exercises to perform as frequently as we can, suggested a Tumble Forms chair, and said he can/should get orthotic braces to help with the ankles. Then a dietitian came for some unknown reason. Finally, Dr. Hernandez, a pediatric gastroenterologist came.
We wanted to see a gastroenterologist because there was some chance that Leo would require a feeding tube. Fortunately he said that we first need to aggressively treat Leo's thrush with IV diflucan, which was started a few minutes before he walked in. After a few days on the IV diflucan, they would re-evaluate Leo and discuss options. At this point, though, he said going for a feeding tube is too risky and unnecessary. G-d willing this hold.
Now, the one thing that each and every doctor has said that has contributed to Leo's thrush, Leo's weakness, Leo's generally difficult state is decadron. We have heard this many, many times from "professionals," but have known it ourselves for the past few weeks based on our own analysis. Unfortunately, we can't just take Leo off the steroids, although he is down to 8mg per day from 12mg. We hope we can continue to decrease 1mg per week, but having read about some of the withdrawal issues, it seems our poor little guy is caught between a rock and a hard place and we have to go slow for his sake. But we really need to get him off steroids for his sake as well. This situation is nearly impossible and watching him suffer only makes it worse.
We decided Leo needed to be taken to the ER last night. He wasn't eating or drinking and seemed very weak. He also wouldn't or couldn't open his mouth. So at around midnight, I took him to Lutheran General Hospital. Although my cousin Irina had just gotten off work there, she stayed with us until about 5am, after Leo had been moved into a room and 2 unimpressive residents had their way with him.
In the ER, we were first visited by the first-year ER resident, who quickly brought the attending. They tried to pry Leo's mouth open with two tounge depressors, but could hardly do it. Even though he resisted and fought them all the way (good boy), they did shine a light inside and saw thrush. The other thing that happened in the ER was a chest x-ray. Still clear, thankfully, so no pneumonia.
Upstairs, the 2 residents asked a truckload of questions and I sometimes felt like I was teaching them. For example, when I said Leo had a bilateral hernia in 2004, one of them asked, "So, what was done?" It should have been more than obvious that hernia surgery was done. Anyway, they started Leo on electrolytes and we fell asleep at about 6am.
In the morning, Dr. Ruge, a pediatric neurosurgeon, briefly stopped by. He said he looked at Tuesday's MRI, which showed no change from the previous one, and that Leo wasn't really a candidate for brain surgery. Thank G-d. Then came a physical therapist, who was the only person all day to actually help us with something. She evaluated Leo and said the 2 issues he has are weakened muscles throughout and his ankles are very, very stiff. She showed us exercises to perform as frequently as we can, suggested a Tumble Forms chair, and said he can/should get orthotic braces to help with the ankles. Then a dietitian came for some unknown reason. Finally, Dr. Hernandez, a pediatric gastroenterologist came.
We wanted to see a gastroenterologist because there was some chance that Leo would require a feeding tube. Fortunately he said that we first need to aggressively treat Leo's thrush with IV diflucan, which was started a few minutes before he walked in. After a few days on the IV diflucan, they would re-evaluate Leo and discuss options. At this point, though, he said going for a feeding tube is too risky and unnecessary. G-d willing this hold.
Now, the one thing that each and every doctor has said that has contributed to Leo's thrush, Leo's weakness, Leo's generally difficult state is decadron. We have heard this many, many times from "professionals," but have known it ourselves for the past few weeks based on our own analysis. Unfortunately, we can't just take Leo off the steroids, although he is down to 8mg per day from 12mg. We hope we can continue to decrease 1mg per week, but having read about some of the withdrawal issues, it seems our poor little guy is caught between a rock and a hard place and we have to go slow for his sake. But we really need to get him off steroids for his sake as well. This situation is nearly impossible and watching him suffer only makes it worse.
posted by Yury at 7:39 PM
1 Comments:
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