Lily was weighed yesterday. Before she left hospital. She commented that the lady who weighed her told Lily she weighed 37 k. I made no comment as there is no need to worry her. But it is not good.
Before she was sick she hovered around 53k. Then when she was very sick last time she dropped to 45k. Back then the doctor made some suggestions, and she has followed them. Anything to improve her appetite, rebuild her strength and physio to help the process. He suggested a bigger breakfast and sweets/dessert always after her evening meal. Plus drinks to help build her up. And he knows that I will sit with her for breakfast, before her carer arrives, and I go off to work.
Now that she is back I will get back to the fresh fruit salad I cut up for Lily in the morning. And her cereal with psysillium husks and hot milk and sugar. And her toast with honey. And the banana yoghurt that she loves.
We sit together while she eats her breakfast. Lily eats very slowly. So breakfast last about 45 minutes.
Lily loves dark chocolate Belgium biscuits and chocolates. When she was in hospital she asked me to bring some in as she thought the hospital biscuits were too hard. The doctor told her she can eat them any time she likes. They never make an ounce of difference to her though. And she likes to suck on barley sugar sometimes.
Her arms are so frail. But 37k is the lowest she has ever been. It worries me. No wonder she is exhausted all the time.
Lily told me she was looking forward to coming home. She has been away for six weeks. A long time, for her. She was worried that the doctor might say she had to stay longer. But he was pleased with her. Even though he said it will take her some time to get her strength back.
And I talked to the physiotherapist today and a program of daily activities is in place for Lily to do with her carers. It gets her outside in the sun and allows her to keep in touch with the world. Her drives to the beach brighten her up. Once the drive is half way through often her carer gets two ice creams, one for Lily and one for the carer. They sit in the car and look at the sea as they eat the ice cream together.
The neighbours were eager to see Lily today, but she went to sleep in her bed as soon as she arrived home. So the neighbours understood that they will be able to see her and talk to during this week, when Lily is ready.
Tonight I helped dress Lily in her most pretty pajamas.
They are beautiful satin ones I bought for her in town. They are a soft green with cherry blossoms on them. Lily said she wondered if i had lost them, as I did not pack them for her trip to hospital. But once before one of her other favourite (English spelling again instead of USA spelling of favourite) pairs of pajamas went missing in a hospital. Even though everything I ever pack has woven labels with her name on each label. And sewn conspicuously on the inside of the collar. And I pick up and do all her washing for her. So I did not want to chance losing another favourite pair of pajamas in hospital.
Lily said 'pack them next time, they would not fit anyone else'. At least she has her sense of humour intact, (this is the last time I will mention that I use English spelling not USA spelling)
The first hospital Lily was in was great. Before that she had not needed to enter a hospital in decades. But the last three years have made up for her previous absence from a hospital.
But an ambulance cannot always take a sick person to a hospital of first choice. Often hospitals are full and will not accept more ambulance patients.
This most recent hospital was not our choice. Lily was so sick this time that at first my whole focus was on her.
It was only later I noticed things that were not as good as the first hospital that Lily and I think is the bees knees in every aspect. It is a wonderful hospital run by the Presbyterian Church and they do a wonderful job. The caring atmosphere pervades every level of staff. From the volunteers in the coffee shop right up to the most senior medical and nursing staff and everyone in between.
Over the last three years Lily has had so much medical attention. I think it has made me a lot more aware of what is good in a hospital (from the patient/client point of view) and what is not.
I like hospitals where there is a caring atmosphere. And there are little things that have an expectation that one will use a waterless cleaner. Expensive I know if everyone uses it. But how much more trouble is there if a sick person (whose health is already in poor shape) also gets an infection because someone failed to keep their hands clean?
And often one senses a hospital where everyone cares. Where everyone works towards common (postive) goals.
Versus this last one where there was a feeling that the staff were so stressed and so under pressure all the time. Lily even made the comment as she was getting better that, "there are not many staff here compared to the last place" and "I can hear the staff talking and laughing loudly, but they take a long time to come when I ring the bell." I can vouch for the last comment. One day I turned up and said that outside was a wonderful day and "would she be interested in a walk outside?" Lily jumped at the chance. We were away from her room for about fifteen minutes. Then we sat on the two chairs in her room and talked for about ten minutes. Total time 25 minutes. When we got back from the walk Lily did not go anywhere near her bed nor near the buzzer/bell that she presses to call a nurse. Lily needs help to walk even short distances, such as going to the bathroom. So it was agreed at the start that they would attend to her promptly.
At that point a stressed looking staff member burst into the room and asked 'what do you want Lily, you rang your bell?' I knew Lily had not rung the bell all the time I had been with her. And said so. Then the staff member admitted that she was busy and had not found the time to attend to Lily and that Lily had rung the bell 'about 25 minutes earlier'. It must have been at least 25 minutes earlier. I felt so sorry for the staff. It was clear that they need more staff. And maybe a kinder group of people at the top running the hospital. Because there is only so much staff can do in the allotted time. And if there are too many patients and too few staff then that is a recipe for disaster. The other thing that shocked me was that often when i arrived there was no water in the jug for Lily to drink. I always topped up her jug when I arrived. It turns out that what Lily has wanted I did for her. But of course I had no way of knowing she had run the bell not long before I arrived. And once I helped her she probably thought not again about the bell.