My dear OH came home on Thursday, a stone lighter, still coughing a bit and with a much worse swallowing problem than even a month ago. He is now to remain on puree C diet and syrupy liquids, which I hope to be able to make more interesting than the limited selection in hospital. We are so glad to be home and relaxing in the sun, in time to watch Wimbledon.
Our GP visited yesterday and agreed with the concerns expressed by the hospital about the long term implications of the dysphagia as I am learning to call it. After about 6 months of stability he has had a another drop in function, even though being properly hydrated and on antibiotics has mean that in some ways he is brighter and has more energy than for several months. That has been the pattern of his AZ since diagnosis only 18 months ago, that he declines rapidly, then steadies for a while, before declining again.
I am wondering how to make an eternal puree diet interesting to look at . he grazes and has little interest in food anyway?
And how to get the recommended 1.5 litres of fluid in , in any form in food or these syrupy drinks?We managed 1250 approx yesterday, he sleeps a lot and is recommended to only drink (or eat) when he is wide awake and can concentrate on his swallow. So tiring, fluids he only manages about 150ml max before being too tired.
It is lovely to have him home and see his smile and pleasure at being in familiar surroundings
Our GP visited yesterday and agreed with the concerns expressed by the hospital about the long term implications of the dysphagia as I am learning to call it. After about 6 months of stability he has had a another drop in function, even though being properly hydrated and on antibiotics has mean that in some ways he is brighter and has more energy than for several months. That has been the pattern of his AZ since diagnosis only 18 months ago, that he declines rapidly, then steadies for a while, before declining again.
I am wondering how to make an eternal puree diet interesting to look at . he grazes and has little interest in food anyway?
And how to get the recommended 1.5 litres of fluid in , in any form in food or these syrupy drinks?We managed 1250 approx yesterday, he sleeps a lot and is recommended to only drink (or eat) when he is wide awake and can concentrate on his swallow. So tiring, fluids he only manages about 150ml max before being too tired.
It is lovely to have him home and see his smile and pleasure at being in familiar surroundings