annanotbob2's Diaryland Diary


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Day 4

Couldn't get through to the ward on the phone to ask how ED's night went, how she is, so came in earlier than I intended, can't manage to get hold of anyone who knows. It's all aprons and gloves before you come into her room, leave them in the bin and wash your hands thoroughly before leaving, every time, in or out and I can't find the nurse who's dealing with her today...

ED's groaning a bit on the out breath, sign of pain, nothing really happening to make her better, antibiotics keeping infection at bay but nothing addressing the cause - whatever's going on in that bloated belly.

Horrible things:

  • DNAR - being asked why she doesn't have a Do Not Actively Resuscitate order, then being informed they're putting one on her file. It "only" means if her heart stops they won't press the alarm bells and go all out to bring her back to life, and I suppose they're right, but fuck, fuck fuck

  • Could she be pregnant? I was asked before they x-rayed her belly. No, I said. Are you sure? How can you be sure? I'd better do a pregnancy test first to be sure, hadn't I? Fucking hell. She can't speak or move - this opened up an area of horror that I can't go near. It does happen to some people in her state - some fucker comes and rapes them, knowing they can't tell. They didn't do a test, but I sat on the bench outside the x-ray room, sobbing hard into my shoulder till she came out, when I took a deep breath and went with her back to the ward.

  • There's no phone signal or internet in her room. Or only intermittently. Every now and then my phone beeps with the arrival of a whatsapp message and I tinker about for five minutes before it vanishes again for another hour. [I later discovered the hospital's wifi so I have internet but still no phone]

  • the beeping of the monitor to show that her heart rate is over 120 or her other stats are below 80, which is then ignored - it's "over-sensitive"

  • the incompatibility of the PEG (feeding tube) equipment - every fucking time she needs pain relief there's an issue because the syringe and the end of the tube don't match because there are two sizes - writing that down has made me worry about her getting enough liquid - I'm going to go and hassle someone... Couldn't find anyone. I don't know how many beds there are but there aren't enough nurses

  • the gap between the written notes and the people applying them - today they're not giving one of her meds because it doesn't specifically say to grind it up, add liquid and insert through PEG, BUT THEY GAVE IT YESTERDAY!! Today's nurse has already called the pharmacy for advice and now has to wait while they contact whoever...


So that was as far as I got. Awful today, really fucking awful. I went off at one o'clock for a meeting about a tribunal to appeal against the decision to reduce my benefits, which was a barrel of laughs, then went back to the ward. She'd had a CT scan while I was gone, but no pain killers since 6 am, and no water. I ended up crying on the corridor, again, sobbing about the fact that she comes last because she has no voice and is behind a closed door. It made no difference - no one did anything. Finally a doctor came with results of the scan - a big kidney stone blocking her bladder, again. Which is what we were suggesting on Friday fucking night as the symptoms were the same as last time.  She was good this one though and agreed, fuck paracetamol for kidney stones, codeine or morphine or both, and loads of water. I can't live through the ins and outs of how no one came to give water and why, but in the end the doc told me they were nervous about the PEG, I said for fuck's sake, it's not that hard, I do it when she's out with me, and the doc said, " You can do it? Er... would you mind?" So I got the fucking syringe and filled it with water and attached it to the tube and undid the clip and pushed the thingy and inserted the water and did up the clip, took off the syringe and repeated this four times and it wasn't that hard. Jesus. T from the care home arrived and when I told her she went mental about how little water ED had had and phoned the care home for a detailed list of times and amounts, which we then copied out and gave to the stupid bloody nurse. 200 ml 7 times a day. That's 1,400 ml, or nearly one and a half litres, fuckers.


And she's first on the list in the morning for an op to drain all the shit off, a nephrostomy, I think the doc said, so I need to be there at 8 and it's midnight now so I'm off. This doc reckons the feed causes the kidney stones to reform so quickly - she's going to speak to the dietitian and check the research to see what are the options.


I am grateful for: the care home staff for supporting me as well as ED through this - N the manager arrived at 9 this evening to watch over ED till she's asleep and let me come home; a chance at getting my benefits reinstated; fish pie made on Sunday for tea tonight, eventually; a blog to rant in; sleeping pills

12:09 a.m. - 16.05.17


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