Princess E's current meds are -
4ml of Cystagon every 6 hours.
Eye drops called Cysteamine every 2 hours while awake.
10 drops of Alfacalcidol in water once a day.
3 Phosphate Sandoz tablets 3 times a day diluted in water.
3mls of Ranitdine twice a day.
4mls of Potassium Chloride 3 times a day.
2mls of Potassium Citrate 3 times a day.
At night when E falls asleep she is then hooked up to a milk feed. Taking 500mls at a rate of 70mls an hour. During the night she also has 2-3 beakers of water in her cot which are refilled up to 3 times as she drinks loads. During the day the water intake is the same.
Sounds hard hun! You have 2 lucky little girls, to be cared for so well by such a fab mum x
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