7/30: Water, Water Everywhere...
There were 2 minor issues at The Clinic. The first was timing of the pump. Yesterday we were told that the pump would infuse the antineoplastons every 4 hours, as usual, starting at 10:45am. But we noticed that it seemed to be behind by 1 hour and 45 minutes. The quantities were correct, but not the times. Today at The Clinic we were told that if we stop and/or turn off the pump, there is no internal clock and the countdown continues from where it left off upon start-up. In other words, when the pump is stopped or turned-off, there's no countdown. What happened? Bathtime. I disconnected Leo for a bath and thought I'd just reconnect him in time for the treatment, 1 hour and 45 minutes after the bath! He still got all 6 doses and now we know.
The second issue was Leo's intake/output from Friday. Each morning we bring the previous day's wet diapers. We also bring a sheet of paper with all of Leo's liquid intake (even ice cream and yogurt count; basically anything liquid at room temperature counts). Yesterday (Saturday), no one at The Clinic mentioned anything, except for Granpa, who noticed the wet diapers were over 4 pounds, while the intake was about 1.4L. That's a big difference, even when we convert from pounds to kilos, but again, no one said a word...until today. That's when Dr. Eva mentioned she was very concerned about that difference, but then realized it was Friday's, not Saturday's diapers; today's numbers were fine. She still made a very serious point that it's preferrable to have the intake equal to or greater than the output to prevent dehydration, especially this summer.
The rest of the day was spent drinking (a lot), eating, watching news about the Middle East, napping, and more drinking. In fact, it's about 11:25pm right now and Leo's intake for today, with another dose of 115mL coming at about 1am, is roughly 2.8L -- that's almost 3 quarts! Leo's still in a good mood, especially when he's eating or drinking. On the topic of drinking, Granpa figured-out a way to prevent the coughing that may cause stuff to go into Leo's lungs. Instead of constantly drinking or gulping, he started suggesting to Leo to slowly drink 2-3 sips at a time and then rest for a second or two. This really seems to be working well and it's definitely better than making thick water with ThickIt!
Tomorrow will probably be a tedious day at The Clinic because I need to learn how to replace a bag "midflight" (i.e. before all 6 doses). The reason is because as the dosage increases, the bags won't be holding enough antineoplastons (the A10) so that bag will have to be replaced. Plus a blood test, so we'll see.
The second issue was Leo's intake/output from Friday. Each morning we bring the previous day's wet diapers. We also bring a sheet of paper with all of Leo's liquid intake (even ice cream and yogurt count; basically anything liquid at room temperature counts). Yesterday (Saturday), no one at The Clinic mentioned anything, except for Granpa, who noticed the wet diapers were over 4 pounds, while the intake was about 1.4L. That's a big difference, even when we convert from pounds to kilos, but again, no one said a word...until today. That's when Dr. Eva mentioned she was very concerned about that difference, but then realized it was Friday's, not Saturday's diapers; today's numbers were fine. She still made a very serious point that it's preferrable to have the intake equal to or greater than the output to prevent dehydration, especially this summer.
The rest of the day was spent drinking (a lot), eating, watching news about the Middle East, napping, and more drinking. In fact, it's about 11:25pm right now and Leo's intake for today, with another dose of 115mL coming at about 1am, is roughly 2.8L -- that's almost 3 quarts! Leo's still in a good mood, especially when he's eating or drinking. On the topic of drinking, Granpa figured-out a way to prevent the coughing that may cause stuff to go into Leo's lungs. Instead of constantly drinking or gulping, he started suggesting to Leo to slowly drink 2-3 sips at a time and then rest for a second or two. This really seems to be working well and it's definitely better than making thick water with ThickIt!
Tomorrow will probably be a tedious day at The Clinic because I need to learn how to replace a bag "midflight" (i.e. before all 6 doses). The reason is because as the dosage increases, the bags won't be holding enough antineoplastons (the A10) so that bag will have to be replaced. Plus a blood test, so we'll see.
posted by Yury at 10:17 PM
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