8/18: The Port and the Antineoplastons
Today's home nurse visit was in the evening because she's on call all night and wasn't working in the morning. This was ok since Leo spent a nice day at the Grandparents'. Unfortunately his port wasn't cooperating when she came. It was flushing (going in), but not returning blood. Even heparin didn't work and we were getting ready for TPA. She suggested we leave the heparin for a while, while everyone got something to eat. Smart lady. When she returned from her dinner, voila, blood. Sorry Genentech. The only bad news is that it's already been a couple of hours since the blood draw and even though the order said stat, I doubt I'm going to get the results faxed to me tonight.
Antineoplaston AS2-1 has gone up by 2.5mL. Leo is now getting 15mL per cycle, which means it pumps for about 12 minutes, up from 10. The A10 is now at the max. Hopefully this increase in AS2-1 will enable Leo to sleep a little more/better (and us, of course), since it has a sedative effect. We saw that in a big way in Houston, especially after the last increase, to 12.5mL. He was very, very sleepy at first but then built-up a tolerance.
Yesterday we realized that we were running out of decadron. Today I asked the folks in Houston to call in a prescription for 5mg tablets to the Osco Drug pharmacy across from my work. They said they didn't have it and referred Dr. Szymkowski to the CVS, "a block away." She called Marina at home to tell her about this pharmacy switch and their phone number. I called and was told that no one makes 5mg tables. Only 4mg and 1mg were available, which were ready for pick-up. I went to this CVS "a block away," but they had no idea who I was or why I was there. To make a long story short, I had to leave work early, run in 100% humidity/rain, and still missed my train. But I got Leo's decadron.
Marina came-up with an interesting way to bathe Leo, since he doesn't like baths anymore. Instead of one of us holding (me) holding him and praying that the other one (Marina) works quickly, she sat him in his little Batman chair. It has a metal frame and cloth back and seat, which means it dries quickly. It also seems comfortable for Leo, since he now has a morning ritual of sitting in it in the kitchen for breakfast. Anyway, he still didn't like the bath that much, but it was much easier and less stressful -- for everyone.
Antineoplaston AS2-1 has gone up by 2.5mL. Leo is now getting 15mL per cycle, which means it pumps for about 12 minutes, up from 10. The A10 is now at the max. Hopefully this increase in AS2-1 will enable Leo to sleep a little more/better (and us, of course), since it has a sedative effect. We saw that in a big way in Houston, especially after the last increase, to 12.5mL. He was very, very sleepy at first but then built-up a tolerance.
Yesterday we realized that we were running out of decadron. Today I asked the folks in Houston to call in a prescription for 5mg tablets to the Osco Drug pharmacy across from my work. They said they didn't have it and referred Dr. Szymkowski to the CVS, "a block away." She called Marina at home to tell her about this pharmacy switch and their phone number. I called and was told that no one makes 5mg tables. Only 4mg and 1mg were available, which were ready for pick-up. I went to this CVS "a block away," but they had no idea who I was or why I was there. To make a long story short, I had to leave work early, run in 100% humidity/rain, and still missed my train. But I got Leo's decadron.
Marina came-up with an interesting way to bathe Leo, since he doesn't like baths anymore. Instead of one of us holding (me) holding him and praying that the other one (Marina) works quickly, she sat him in his little Batman chair. It has a metal frame and cloth back and seat, which means it dries quickly. It also seems comfortable for Leo, since he now has a morning ritual of sitting in it in the kitchen for breakfast. Anyway, he still didn't like the bath that much, but it was much easier and less stressful -- for everyone.
posted by Yury at 9:23 PM
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