Kiss

The catheter came out last night, the last direct link with the nightmare of a few long weeks ago. The UTI seems to be gone as well.

She ate her lunch today hungrily, and has been taking fluid slowly but steadily. They weighed her yesterday and she was 48 kg - a weight considered worrying in itself a few months ago - and this was after we started feeding her up. I wonder what her weight actually dropped to. 

She is more alert than for a long time although verbalising a bit less. I am not  worried about the occasional jolting any more and I am happy to trade it for more aliveness: she doesn't seem distressed by it so I won't be either. 

All the staff are commenting how she is 'getting better' and she certainly looks healthier. This might have something to do with the fact they have started washing her hair again. The next goal is to get her up and dressed and in her chair and see how she copes with that. 

It's the little things, though. I constantly tell her how much I love her and a couple of days ago the responded by looking at me and trying to say something. I kissed her and she definitely kissed me back.

Today our friend Phil was there to see her and at the end of the visit she bent over and kissed Rosemarie goodbye. Rosemarie looked at her and blew her a kiss back. 

It's like shafts of sunshine through the drizzle.

Fluid For Thought

Much to chew over. 

Rosemarie seemed to do OK without the drip. Fluid intake hovered around 800-1000 ml and over the course of the week her food intake climbed laboriously. She seemed happier without the drip (understandably) but I was worried that she was now undershooting the fluid target so significantly and would wind up dehydrated again.

Another blood test Friday and we got the results yesterday. Despite my fears sodium level was actually down to 144 from 145 and all the other indicators were good.

So what's going on? How long does dehydration take to affect the sodium level? Somebody somewhere knows, but that doesn't include anyone I have spoken to or anything I have so far found on the internet. 

Or the dietician's figures are higher than actually applies to Rosemarie, and she is stable at her current fluid intake levels. This is the answer I think her assigned GP inclines to, and he has requested a reassessment. 

She has also contracted another UTI, and this I think was the explanation for her twisting and contorting on the bed over the last few days. I understand it is painful anyway; it must be a lot worse with a catheter in. She started Amoxycillin monday night and seemed already to have improved a little today.

This manifests itself in more reaction, sitting more upright, and intermittently being willing to take fluid and food. Chocolate Trifle went down quite well today, and the guava and mango juice I bought to replace the boring orange and apple juice are popular as well.

The jolting is present but intermittent, and occasionally looks rather like attempts to hit me. I get no smiles any more, and there is less laughter. There are occasional quite clear communications, usually variations on 'NO, DON'T' and she makes it abundantly clear when she does not want another mouthful of food.

The Palliative Care nurse called in today and everyone agreed that Rosemarie was being discharged, although she can be referred again with a single phone call.

There have been no seizures since the 3rd April and the jolting is not getting worse. She seems to be eating and drinking more safely (more alert) although I have reservations about the speed she is fed by a couple of the care workers.

I really want to be positive but a large part of me is waiting for the inevitable next chest infection.

Much to think about. But not tonight. Bed calls.

Sums

Rosemarie's  assigned GP had supposedly made out a prescription for 7 days of saline drip, and had backed that up and stated that the plan was to keep her on the drip until her rehydration was complete and she was taking sufficient food and fluid orally. 

I had a worm of doubt on Sunday night, seven days after this started, looking at the depleted bag hanging there and wondering whether a new prescription had been written (over the weekend? In anticipation?, but the District Nurses had a habit of coming late so I told myself there was nothing to worry about. And anyway the blood test results should be back Monday and should show reduced sodium levels. She was eating a little and starting to rehydrate orally so it may not be critical if she missed a day.

Monday morning found me phoning the Care Home to check the drip had been replaced Sunday night. Of course it hadn't. The nurse had seen the entry I had asked to be inserted in the diary and had phoned the Rapid Response Team to check. Rosemarie was not on their list of jobs. But they would Sort It Out.

Just as I was getting ready to leave for the Care Home Rosemarie's assigned GP rang me. The results of the blood test were back and showed her kidneys were fine, and her sodium level was down to 145 which suggested she was rehydrated. Excellent. Oh, so he was taking her off the drip. Not so much.

We spoke at some length. 

The inescapable conclusion I came to was that his starting point was that subcutaneous drips should only be used in the short term and should be dispensed with as soon as possible. Everything else, including the data, was secondary. I had encountered this before so we went through the same objection handling. Why was it bad? Irregular delivery and risk of sodium build up. But she had been on the drip for two weeks and her sodium level had reduced significantly. Risk of infection. The nurses checked the site every visit and changed it regularly, and there was no indication of any infection. New one: if she was taking a lot of fluid subcutaneously it would reduce her 'thirst' and she would be less likely to want to take fluid orally. Good. Some numbers at last. 

Let's do some sums.

The dietician was adamant that Rosemarie needed about 1900 ml of fluid a day (possibly more if she was fighting an infection), and she could expect to get half of that from her food if she ate her three meals a day (which she hasn't since about the beginning of March).

So, on a good day we may get 800 ml fluid into her orally and maybe another 150 ml in the sweet desserts she is willing to eat. On a bad day that total would be 500 ml max. So 1000 ml via the drip takes those figures into the right area (nearly 100% on a good day, 75% on a bad day) and allowing for some variation in the exact daily amount she needs, would definitely contribute to her rehydration. Most days she should still be thirsty though, and indeed it is usually quite possible to keep feeding her fluid if you are patient. The problem is how long it takes. 

Thickened fluid is best fed to her on a spoon, maybe 5-10 ml at a time. The SALT recommended giving her three goes at swallowing before trying another spoonful. So we are talking maximum 10 ml every 30 seconds. If you could feed her like a machine that would mean a 200 ml serving would take a minimum of 10 minutes to give to her. But of course she is not a robot: she clearly gets bored with the process and signals this by clamping her teeth together and moving her mouth away from the spoon. Wait five minutes and she is quite happy to have a few more spoonfuls. The real time it takes to give her 200 ml safely is between 30 and 40 minutes, if she is alert and co-operative (much more likely since we stopped the Clonazepam).

So what happens when we take the drip away? On a good day she will have 50% of what she needs and on a bad day 25%. This does not seem to be the recipe for continuing improvement. Everything is predicated on the hope that she will start drinking like a fish. To replace the fluid from the drip orally she will have to spend an extra two and a half hours drinking. We need to find a safe way to speed that process up.

There is also some doubt about her rehydration. A sodium level of 145, according to my research, is the level at which you should begin to worry, the upper limit of what is normal. The GP said that her previous blood results showed similar levels of sodium, and that could indicate it was her natural level.

Or it could indicate that she has been chronically under hydrated, as we have suggested over many months.

I stood back from the head shaped dent in the wall and asked if at the very least we could have another blood test soon so we could see what the impact of removing the drip was. He agreed.

So there is no longer a drip standing sentry by her bed. The room seems bigger somehow. 

No raging thirst has materialised in the last two days. She is eating a bit better but she is not increasing her fluid intake. 

She looks better, smiles more, interacts more, looks at the pictures a lot and seems more alert. 

But the sums suggest a less pleasant truth. At the moment all paths lead downwards.

Slowly

Saturday was another good day. Our friend Celia was down from Derbyshire and was delighted with the changes in Rosemarie's behaviour. She was spending a long time looking at the pictures and making sounds about them; lots of smiles, some laughter, squeezing fingers when you held her hand.

She ate a creme brulee, a chocolate sundae, and a strawberry Nutilis. She drank 400 ml thickened juice and took all her meds. She seemed to be interacting and some of her sounds were almost words. 

It obviously tired her though. She is plainly still very weak and although she is starting to eat there is a long way to go before she is going to actually start putting weight back on. 

Sunday morning I got a phone call: another seizure. Again quite short, and not as severe as the previous one, and she fell asleep immediately afterwards with no Diazepam.

By the time we got there she was awake, and with the spirit but not the strength of the previous day. The seizure had clearly taken its toll, and she slouched in the bed and tired easily, but still drank and ate well. We had brought in some pureed chicken from home along with a concoction of custard, double cream and jelly. This went down very well. 

Today was a good day as well. The nurse said Rosemarie had been very sleepy and had 'refused' breakfast - a response nobody seems keen to define. They also apparently had trouble getting her to drink. Us not so much. Either she really is sleepy earlier on and wakes up for us later or they are using it as an excuse not to spend so much time with her. 

I think I need to make an unannounced early morning visit.

Today I took in some more pictures of her granddaughter and she spent most of the time looking at all the photos, sometimes with a quizzical look but sometimes with a smile. 

Seem to be putting a lot of effort in for small movements forward. The drip is essential, she is not eating nearly enough yet and there is still the ever present risk of aspiration and another chest infection.

But she is alive and fighting.

More Soft Noises

Another seizure yesterday morning. Lasted a few seconds (according to the Nurse who was called) or a few minutes (according to the care worker who was changing her at the time). I was phoned shortly after 9 by the Nurse but she could not talk for long as she was in the middle of her Medication round. She wanted to reassure me Rosemarie was OK and hadn't bitten her tongue or lip this time. They didn't feel the need to give her any Diazepam and she fell into a deep sleep almost immediately. She awoke mid morning and seemed fine. 

I rang the doctor's surgery and left a message, and an hour later her assigned GP called me back. He had the results: her sodium level was still high but had fallen from 157 to 154, and her kidneys seemed to be OK. He had signed off seven days of drip and would probably do another blood test middle of next week.

By the time I got to the Care Home the Nurse had gone home so I wasn't able to get any more information about the seizure. The new nurse only knew what had been written in her notes (not much) and passed on at the brief handover (not much either) but I got to speak to the care worker and established that Rosemarie had not been too distressed during the seizure.

She certainly seemed OK when I entered the room and I almost got a welcome. I had brought some more pictures of her granddaughter and made a show of putting them up. She seemed to follow what I was doing and there were some smiles and verbalisations. 

The saline had run out and the replacement wouldn't arrive until...'some time after six' but that was mainly because the drip rate had been set faster (I have learned a lot about drips in the past few days).

She was chatty and happy to eat. I had brought a chocolate sundae that was very popular, and a creme brulee that provoked a genuine "Mmmm". I also got her to drink 200 ml thickened juice. She had her medication, and the nurse suggested I try some Nutilis. It was strawberry flavour, and actual quite tolerable, so I thought I would give it a go.

She ate it all, washed down with another 150 ml juice.

She was quite tired by now, but still looking at the pictures and making soft noises.

This seems like a Dreamtime. 

Or the eye of the storm.