A slightly out of date photo - this was taken at the birthday lunch Helen and I had with Louis at Sono, a beautiful Japanese restaurant at Portside in Brisbane. It was delightful with a view across the river, sunken wells for our legs under the table so we could pretend to be kneeling in comfort, all Japanese staff wearing gorgeous fabrics, yummy food and ume shu with lime.Anyway....back to the business of updates and current reality...
Since Helen was admitted last Wednesday night things have changed only slightly. They started trying to correct the sodium with IV Normal Saline - and quite a lot of it in a short time. I was quite worried they would overload her with fluid but as this coincided with me going away for 2 days decided to try to trust that the other doctors know what they were doing - and even if they didn't she was in hospital where it could be sorted out! 24 hours later they stopped this and reverted back to 1L oral fluid restriction. They also ceased her cipramil and eplim thinking that maybe both were contributing to the sodium drop. She was referred to an endocrinologist - Dr L and finally to a palliative care doctor Dr H. While the medical oncologist Dr C is on holidays she is under Dr M who is the oncologist I originally wanted her to see when we came down from Darwin but I haven't met him yet. As of Sunday the sodium was not improving much - stable at 124 and Dr L changed her fluid restriction to 750ml for the day. They have re-instituted the cipramil at a lower dose and are leaving her off the epilim for the time being. Dr L says that only some of how Helen is is due to the sodium. A large part is probably due to her deep depression and both she and Dr A, the psychiatrist, think there is an "organic" component to this but they can't put their fingers on what that is - alas this means no useful comment on treatment, prognosis, potential for improvement...
In terms of how Mum seemed when I came back from my break: she is no longer intensely anxious and fearful; she does not seem to be having paranoid thoughts; she remains physically weak and can only walk with a walker now; her speech and thoughts are still very slow; her affect is quite blunted (for those without psychiatric/medical background - she has a fairly expressionless face with no emotional response or reaction to those around her); she still has some weird muscle stuff going on - mostly speaking through clenched teeth and Louis has noticed full body shakes and twitches at times. She says she is in no pain physically. She is not particularly breathless and not coughing. Yesterday however she was moaning slightly on every out-breath which was pretty awful . All I could get from her on this was "I'm so unhappy".
All we can do is hang on and hope for shifts. At this stage I think they plan to keep her in until next week. This means her flat here is vacant if any family members want to visit - we have deluxe accommodation available. For Louis and me to have someone else who loves her and would sit quietly with her would be a great relief. Even no talking but just providing company and comfort and an advocate with nurses etc. In some ways she feels really safe in hospital and is certainly relieved to be there but in other ways she is understandably worried that information won't be passed on correctly and they will make mistakes.
This weekend just gone she had a visit from her sister Jennifer from New Zealand.
Yesterday she received a beautiful copy of a photo of her mother Janet drawing fairies on the blackboard when she was a student teacher. Both gave her pleasure.
My grandma Janet was an amazing artist throughout her life and crayon fairies are not the half of it....
No comments:
Post a Comment