9/18: The Wound, the Decadron, and the Schedule
The tunneling Leo's wound was doing after the surgery last week seems to have slowed down. At least is doesn't seem any worse and of course we're hoping and praying the whole wound heals very soon. The nurses are still doing daily dressing changes, which seem to be more scary than painful and, again, hopefully the wound heals and this to be a thing of the past, even though it'll leave a permanent reminder -- not that we'll ever need one. To further ensure the wound is healing and not going to give Leo any problems, I made an appointment to see Dr. Schechter Wednesday. He's a plastic surgeon that came highly recommended and should know his way around wounds. We've just had such aweful experiences at Children's that we decided to stay away from there. Every time we've gone there, except for Leo's successful hernia surgery in 2004, it's been bad news. This last time, the surgical staff treated us as if they were doing us a favor. We're still recovering from it.
In happier news, Leo's decadron dose is down a whopping 17%! That seems much more impressive than a 2mg decrease over the past week and a half. He's now at 10mg per day (4mg at 6am, 3mg at 2pm, and 3mg at 10pm). Regardless, Leo seems a little more alert; has started to move his left hand more than before; his voice is starting to return (although not speech yet); he's smiling and even laughing; and generally seems less uncomfortable. These are all baby steps and that's all we want for now.
Speaking of wants, there's something else we want. We want the MRI scheduled for next Tuesday, September 26, to show another decrease in tumor size. I hope that's not too much to ask. Not that it matters, but this MRI turns out to be for Burzynski's BT-11 treatment protocol. I thought we would delay the scan because of last week, but Houston didn't. The treatment, itself, is also slowly increasing after the 3-day hiatus last week. We're moving up very slowly and Leo's on 130mL of A10 and 13mL of AS2-1. I think they'll go up to 150 and 15 tomorrow because today's blood test was fine.
In happier news, Leo's decadron dose is down a whopping 17%! That seems much more impressive than a 2mg decrease over the past week and a half. He's now at 10mg per day (4mg at 6am, 3mg at 2pm, and 3mg at 10pm). Regardless, Leo seems a little more alert; has started to move his left hand more than before; his voice is starting to return (although not speech yet); he's smiling and even laughing; and generally seems less uncomfortable. These are all baby steps and that's all we want for now.
Speaking of wants, there's something else we want. We want the MRI scheduled for next Tuesday, September 26, to show another decrease in tumor size. I hope that's not too much to ask. Not that it matters, but this MRI turns out to be for Burzynski's BT-11 treatment protocol. I thought we would delay the scan because of last week, but Houston didn't. The treatment, itself, is also slowly increasing after the 3-day hiatus last week. We're moving up very slowly and Leo's on 130mL of A10 and 13mL of AS2-1. I think they'll go up to 150 and 15 tomorrow because today's blood test was fine.
posted by Yury at 8:08 PM
1 Comments:
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