Grinding Metal

[Edit One]

I want to start getting this down while it is fresh in my mind. If I miss anything or run out of energy tonight I will edit it tomorrow.

A Medication Review was scheduled for today and in light of the change in Rosemarie's condition I tried to contact the Community Psychiatric Nurse yesterday to check whether it was worth going ahead. She wasn't there and so I left a message. She rang me at 9.15 this morning and said we should go ahead.

I am extremely glad we did.

The first order of business was to get the next bag of saline prescribed. I phoned the duty nurse and she said she had been trying to contact the GP but hadn't got through. She did say that Rosemarie had taken her medication but not eaten any breakfast. Her breathing was no worse and no better than the previous night. 

I had an early lunch and phoned back to check how things were going. Apparently two bags of saline is all you get. Something about too much fluid being a bad thing (not what the District Nurse had said Monday night). The nurse promised she would phone the GP again and say I was asking for options. 

I arrived early for the meeting and as I was taking my coat off the nurse came in and handed me her phone, saying the GP wanted to speak to me.

This was not the GP who had seen Rosemarie. He was away. This doctor was going mainly by his colleagues notes from Monday, and not even taken into account today's vital signs measurements. The gist of his communication was the Rosemarie Was Dying, and the thing now was to make her as comfortable as possible while this happened. It could be in the next ten minutes, this evening, tomorrow or a couple of days time. Maybe even as long as a week. He didn't endear himself to me by telling me that Only One Person Knows How Long She Has Got. I ignored this and said that removing the drip was a death sentence because she was refusing to drink anything and she would not survive long like that. And what was the problem with the drip?

Apparently the problem is that she has raised level of sodium in her blood (because of dehydration). Saline has sodium in it. Therefore giving her saline might raise her sodium level more and that was a Bad Thing. So no saline.  Any other option? Maybe Dextrose, but they may not supply it to Care Homes. I didn't bother to ask why not, I just put on my best polite voice and asked him to try. He said he would talk to the Rapid Response Team.

The call left me feeling like I had been kicked in the stomach, and I was less than 100% as I picked up my notes and headed to the Review.

I started by explaining Rosemarie's current condition and the prognosis I had been given. This raised some eyebrows round the table, particularly the comment about saline. The Psychiatric Doctor said that there was only a tiny amount of sodium in 1000 ml of saline and he thought it well worth the slight risk, since rehydration would bring down the sodium level anyway and withdrawing the saline would definitely raise it. The Neurologist agreed and said she would speak to the GP (I felt sorry for him already) and also said that she knew the Rapid Response Team well and would talk to them too.

We then got onto the subject of Clonazepam. I shared my concerns about the increased dosage and illustrated them with some pictures I had taken of Rosemarie slumped drowsily in the chair. The dose was instantly halved with the intention of reducing it to zero in a week. 

The Doctor then dropped the bombshell that if it had been making her that drowsy it may actually have been contributing to the problem. A drowsy person is less likely to be interested in eating and drinking anyway, and especially if it involves swallowing past a load of phlegm in the throat. It follows that it may also make aspiration more likely, especially if the person is already having difficulty swallowing. 

The rest of the review was almost an anticlimax. It was agreed that it was no longer a Community Mental Health responsibility and it was time for Palliative Care to take over advising/directing the GP. The Neurologist was not technically involved either but she had a wonderful I've Started So I'll Finish attitude and said she would return to check on Rosemarie the next day. 

She came back with me to the room and examined Rosemarie herself. She pronounced that she seemed comfortable (little clues I had missed so I had been unable to answer the question in the meeting) and that the dose of Glycopyrronium could and should be doubled.

She also checked the saline bag and said that the rate could be reduced to make it last through the night. I cautiously raised my concerns and confusion about the fluid level requirements given by the dietician and the alleged danger of giving her too much fluid,

She explained that Rosemarie's body was fully occupied fighting the infection and the priority was to look after her liver and kidneys and brain and worry about full rehydration later, and not give her system anything unnecessary to do. Simple. 

With a few more kind and sensible words she left to chase up the GP who was not returning her calls and the Rapid Response Team who were not answering at all.

Shortly afterwards the nurse came back to check Rosemarie's vital signs and give her the days final dose of antibiotic, which she promptly spat out. Left alone with Rosemarie I felt my recent more optimistic frame of mind withering. Her breathing seemed more tortured and the swallowing impossible. The calmness induced by the meeting was being overwhelmed by distant cold panic again. 

The nurse came back to administer the Glycopyrronium and made things worse. She listened to Rosemarie for a while and looked me in the eyes and said "This is not good." I asked whether she thought Rosemarie would last the night but she said she didn't know. 

So that was useful. How am I giving off this signal to certain people that makes them think I am not facing up to reality?

I sat there for another two hours through the shift change holding Rosemarie's hand and listening to her struggling to breathe. I wondered if I would have the courage to go home. 

But as the time crawled by her breathing began to change. The noises became less liquid and more rasping. At first I was worried that it was some new deterioration but it then occurred to me that this could be the injections working. If the phlegm was drying up the gasping, open-mouthed breathing she was doing would start to sound like that. I felt myself begin to relax, and even entertain a little hope. 

Then she strained and coughed up another mouthful of phlegm from her chest and swallowed it with no apparent problem. 

Shortly after she seemed to pass from semiconscious to a light sleep. Her breathing was definitely easier, shallower, quieter. 

Is that a good thing?  I feel after today that I don't know anything.

I finally came home, convincing myself she will make it through the night. I know that the most  we can expect, if she gets through the next 12 or 24 hours, is a partial recovery and a nervous wait for the next infection. 

But every day is precious to me.