9/13: Home Again
Leo had been scheduled for another visit to the operating room this morning at 11am. The reason was mainly for a dressing change, but of course there was the chance of needing another debreading. The first bit of good news was that Leo was taken at 9am and the second was that another debreading was not necessary. The third bit of good news was that he could go home today without needing antibiotics at this point. So far, the preliminary culture results have been negative and we're continuing to pray for this to remain. Dr. Walterhouse, a hemotologist, stopped by in the morning and spent some time with us. Leo's developed some little red spots on his torso and what looks like a rash on his back and elsewhere. Dr. Walterhouse thinks it's all because of decadron, which is what the Houston folks have told us. We took Leo home late afternoon.
We're letting him rest tonight but will be restarting antineoplastons tomorrow, albeit on half the dose, per Dr. Szymkowski's advice. It'll be 100mL of A10 and 10mL of AS2-1. If all goes well, Friday we'll split the difference with the max and increase to 150mL and 15mL. Saturday is the best/fastest-case scenario to be back on the maximum dose.
Leo doesn't have a port anymore and just has a cental line (Broviac). The good news is that without the port, there will be no more Huber Needle changes and the blood draws should be much easier. The bad news is that instead of weekly needle changes, he now has to have daily dressing changes of the wound and no one is willing to predict how long this will take, especially because he's on decadron, which slows the healing process. The people at Children's prescribed Tylenol with codeine (aka Tylenol 3) for discomfort. My thinking is that if he had to be sedated today for a dressing change, "discomfort" is the understatement of the century. The guts of the dressing is iodoform strips. Tomorrow will be our first glance of this stuff, but everyone's described it as very long, narrow ribbons or strips of gauze dipped in iodoform that are packed (stuffed) into the wound with one of those long q-tips. It needs to be in there good and tight to prevent any further tissue necrosis and/or infection so that the wound can heal from the outside in. That whole packing/stuffing is then covered with gauze, tegaderm, tape, etc.
Speaking of decadron, we started lowering his dose on Monday, after the surgery. He's now on 11mg per day (4mg at 6am and 2pm and 3mg at 10pm). Hopefully next Monday we'll go down another notch. Today we filled another decadron prescription and I made the mistake of reading all the side-effects, etc. The FDA won't approve medicines like antineoplastons without a fight, but they let this stuff on the market!? The inmates really are running the asylum...
We're letting him rest tonight but will be restarting antineoplastons tomorrow, albeit on half the dose, per Dr. Szymkowski's advice. It'll be 100mL of A10 and 10mL of AS2-1. If all goes well, Friday we'll split the difference with the max and increase to 150mL and 15mL. Saturday is the best/fastest-case scenario to be back on the maximum dose.
Leo doesn't have a port anymore and just has a cental line (Broviac). The good news is that without the port, there will be no more Huber Needle changes and the blood draws should be much easier. The bad news is that instead of weekly needle changes, he now has to have daily dressing changes of the wound and no one is willing to predict how long this will take, especially because he's on decadron, which slows the healing process. The people at Children's prescribed Tylenol with codeine (aka Tylenol 3) for discomfort. My thinking is that if he had to be sedated today for a dressing change, "discomfort" is the understatement of the century. The guts of the dressing is iodoform strips. Tomorrow will be our first glance of this stuff, but everyone's described it as very long, narrow ribbons or strips of gauze dipped in iodoform that are packed (stuffed) into the wound with one of those long q-tips. It needs to be in there good and tight to prevent any further tissue necrosis and/or infection so that the wound can heal from the outside in. That whole packing/stuffing is then covered with gauze, tegaderm, tape, etc.
Speaking of decadron, we started lowering his dose on Monday, after the surgery. He's now on 11mg per day (4mg at 6am and 2pm and 3mg at 10pm). Hopefully next Monday we'll go down another notch. Today we filled another decadron prescription and I made the mistake of reading all the side-effects, etc. The FDA won't approve medicines like antineoplastons without a fight, but they let this stuff on the market!? The inmates really are running the asylum...
posted by Yury at 8:40 PM
1 Comments:
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