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Handhold, in HDU with respiratory failure and terrified

967 replies

Seafour · 22/11/2018 04:28

Just that, is anyone awake?

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Crownandheelshigh · 01/12/2018 17:26

Thank you @NancyWho.

It worked perfectly last time so here's hoping it works again!

I was a leaving care child and a majority of workers are amazing.

Seafour · 01/12/2018 17:30

Having the best day ever, lost at bowling, had a beer at lunchtime, bought M&S party food for this evening, tree up in the garden room, fireplace decorated, one Christmas movie watched, having a short break before watching Elf and opening a bottle of champagne to have with our party food.

Handhold, in HDU with respiratory failure and terrified
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Seafour · 01/12/2018 17:36

Won't be sharing champagne with the dgc.
It's so nice to have them here without ds, we can be proper grandparents for once.

They are great kids very undemanding, they know they could ask us for a big present but they've asked for a backpack and water bottle and an alarm clock and dressing gown.

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Andro · 01/12/2018 17:39

Seafour, it sounds like a wonderful afternoon - and that gift list would have me looking for a way to spoil them! Enjoy your champange.

JustanotherCHRISTMASuser01 · 01/12/2018 19:04

Oh i love it when children ask for something really small at Christmas - one year my beautiful neice just asked for a meal at Toby with just her mum. When kids are so undermanding makes me want to spoil them.
Your afternoon sounds lovely.
I've been into Nottingham and finished my Christmas shopping today tomorrow were going to clean and dec up for Christmas.

Seafour · 01/12/2018 19:17

Andro when dh & I got together we couldn't afford to buy big presents so we did "something you want, something you need, something to wear, something to read" Santa filled stockings. The kids had a very small budget to buy gifts for each other so when Christmas Day arrived there were 9x9 gifts between kids, 4x9 gifts from us, 9x2 gifts from kids to us and then extended family. There was a strict timetable to get them open, I guess the modest present thing sticks.

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Seafour · 01/12/2018 19:18

User, you must live within spitting distance of me Grin

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WitchDancer · 01/12/2018 20:11

If you are waiting for me to knit tampax key rings you'll be waiting for a long time! I have a 'to do' list as long as my arm and no energy to get stuff done.

I for one am appalled and saddened by your tale of your young couple. They were certainly blessed when you took on the system on their behalf. Once again I am amazed at what's beautiful person you are

2018SoFarSoGreat · 01/12/2018 22:03

That young couple are so very fortunate that they crossed paths with you. You changed their lives. You really are a good human, aren't you?

Applesandpears23 · 01/12/2018 22:06

The tale of Mel saddens me but unfortunately doesn’t surprise me. Bring back matron.

2018SoFarSoGreat · 01/12/2018 22:08

Posted too soon.

That picture! It looks like how I imagined you, somehow. Beautiful, warm, calm. No idea how that is possible with all you go through, but that's what I see.

DGC. Nothing like them to gladden the heart. Mine are coming in a few hours to spend the night and I can't wait. They make me feel pure joy. Enjoy your time with yours and let joy fill your soul on this beautiful day.

Surgery we talk about on another day. For now, joy 💖

Seafour · 01/12/2018 22:09

Witch thank you, I love what woolly hugs do, you lot are amazing.

the way I see it, I was just doing what a normal decent human being would do. It was the point at which I lost all respect for some of the staff on that ward, they were being paid to care for sick people not judge them based on their address or the state of their pyjamas. The fact that they (and other patients) could stand by and do nothing (except give her opiates and sleeping tablets) is completely foreign to me.
With my background and lack of education that could so very easily have been me, I escaped a life of being judged only because I had extended family who cared about me and lived near me until I was ten. Those early years and the love I experienced from my grandparents is the difference between me and Mel.

I will always speak up for the underdog, have done numerous times in hospital, it's not made me popular at times but it's that "adopting the moral high ground" thing that my grandad taught me again.

I always have to do everything I possibly can to help those less fortunate than myself, then I can rest easy in my bed at night, I don't always sleep as you know but I carry no "could I have done more" thoughts.

A feast has been consumed, dgc watched Elf for the first time and declared it the best Christmas movie ever. They are tucked up in bed fast asleep. Elf has to be moved ready for the morning. I'm shattered, need to ventilate SATS now 74%, see you all tomorrow.

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mineofuselessinformation · 01/12/2018 22:29

Sleep well, Sea.
I've been following but not really commenting, except once.
Tomorrow is a new day, as I'm sure you know, but you may well get a bit of rebound from doing a lot today, so watch out for it.
Your house looks beautiful. Have the most fabulous festive season.
And, especially in the run-up to your op, make sure you do something that gives you pleasure each day.
You certainly deserve it. Thanks

Izzy24 · 01/12/2018 22:38

@sea

Glad you’ve had a good day.

The story of Mel is both dreadful and uplifting.

I hope you’re asleep or at least peacefully resting and very glad you didn’t cancel your surgery.

The storm has picked up again here but there’s something very satisfying about being inside and warm listening to the elements outside.

Seafour · 02/12/2018 10:46

Countdown to surgery 4 days

Pancakes, fruit, squirt cream, strawberries, raspberries and maple syrup for breakfast.

Cat, dog, rabbit and human advent calendar doors have been opened. Christmas music is playing

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Stopyourhavering64 · 02/12/2018 11:22

seafour , I'm truly appalled by the treatment Mel received...makes me feel embarrassed to be a nurse. As part of my training in the 80's, the 'activities of daily living' were drummed into us and that giving a bed bath was one of the most welcome procedures that could be undertaken by a hcp for a bed bound patient. I think modern nursing sometimes overlooks the patient beneath the disease processes / drugs and getting back to basics is needed
IMO many ...patients are discharged far too soon...obviously due to the pressure on beds. Again when I did my training there were 'cottage hospitals ' where patients could go to recuperate post op....their demise has seen the NHS become a conveyor belt and patients needs are overlooked and breakdown in communication- don't think I'd want to be starting my training these days...counting down to my retirement with all my experienced peers

Seafour · 02/12/2018 16:05

Havering what happened to Mel was truly disgusting, she was being sedated on top of taking opiates, in my opinion she was too sedated first thing in the morning to respond properly to the hca's asking her if she wanted to have a wash. It was being documented as "patient refused to wash" or patient chose not to wash" I know because I've seen her medical notes.
When she was readmitted with a wound infection, it was found to be ecoli, so you would think the most important thing would be to ensure she was clean and wearing clean nightwear. There appeared to be nobody who was capable of applying a bit of common sense to her care and ultimately she nearly lost her life. According to her notes at no point in the nineteen days she on that ward before the pump came off did she wash or change her pyjamas. I still don't understand how nurses and HCA's could wilfully neglect someone so vulnerable not to mention ill, nobody asked if she had clean things, wash things, toothbrush or hairbrush. This was a vulnerable couple who had little life experience and their only experience of hospitals prior to her readmission had been the four day stay post surgery.
When I went to their flat for the first time, it broke my heart, the filthy mattress on the floor and a canvas wardrobe were the only items of furniture in the bedroom, a small sofa, coffee table and an old tv were the only other items off furniture they owned. They weren't in any debt but every penny of his salary were accounted for leaving a small amount for food, they lived on a diet of cheap ready meals, instant noodles and cereal.
There were any number of reasons they should have been identified as vulnerable, at her pre op assessment she had a bmi of 16, that alone should have triggered further investigation.

Anyway they are in a good place now, helping them move to somewhere new, closer to shops, health centre, learning opportunities has been transformative. Learning to read and write has empowered them enormously and they have huge potential.
I had a conversation with one of the HCA's who had been involved with Mel's care when Mel visited me in hospital last year, she was of the opinion that when Mel's case settled they would blow all the money on drink and drugs, no sympathy or guilty conscience there. I don't know why but that shocked and saddened me in equal measure.

Sadly Mel's isn't the only story I have of neglect and my legal team have not just helped her, in all but one of the cases the consultants involved have been supportive and instrumental in the Trust accepting liability, because the majority of them have been failures in nursing care.

Well I've had fun, dgc have gone home, dh has taken Lola for a walk and I'm attached to a ventilator. Tomorrow will be finishing Christmas shopping and packing bags.

I will be subjecting you all to my very eclectic taste in music whilst on the bus so you have been warned.

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MarieVanGoethem · 02/12/2018 21:18

Am v glad you had such a fun weekend Seafour - also glad you seem to have decided to stay here. Obviously I manage to miss Crucial Happenings, just relieved didn’t find I had 70 pages of them to catch up on or something.

Wasn’t even doing anything super-exciting, just that Friday my ridiculous body tizzed out & everything had to go into Brownie stuff + Brownies (we were dressing up in several weeks of my [suitable] saved-up recycling plus my Assistant Leader’s odds & ends of wrapping paper [is there a 12-step programme for giftwrap, am slightly concerned after the amount she turned up with...?] & the girls had a spectacularly joyous time; & I got to give out badges that have seen girls REALLY challenge themselves to achieve & I’m Just. So. Proud.); then yesterday I was playing Pokémon Go! with a friend which = today in bed, apparently. Which was not the plan, the plan was Playing More. So possibly “sulking in bed” = strictly more accurate.

Have just realised I’ve not eaten the chocolate from my advent calendar yet today. I have eaten, though, but my food diary is not exactly looking stellar. I do not understand the whole eating-when-not-hungry thing. Ditto drinking-when-not-thirsty. Meh.

Have you your pyjamas chosen for later this week? (Possibly I’m just a bit weird about PJs & needing The Right Ones, to be fair, but I always feel More Settled when I have those sorted. Sod the enormous bag of medications, most of which pharmacy do not stock, the jamas are the thing 🙄)

Hope that for once everyone Follows The Plans. It is scary how people will autopilot in face of huge signs & repeat briefings though. I just have a chlorhexidine allergy (that, obvs, trying to avoid provoking to anaphylaxis) nothing like your response to lying flat. Still v stressful having people trying to use the stuff on you when there’s a sign on your door & over your bed (& obviously you’re clearly labelled & it’s in e-notes).

It’s kind of amazing that - despite the new Dignity Champions there seem to be all over the place, that must be a fun thing to have on your CV - patients are worryingly often left unwashed. Or staff don’t raise with family that a patient doesn’t have any underwear, so they’re left using paper pants. After having my appendix out (with bonus removal burst ovarian cyst; do not recommend either thing i. 2 weeks after major knee surgery ii. just after New Year) I wasn’t able to mobilise bathroom for over a week. Couldn’t wash myself, either. Unfortunately [lack of] care I received meant I developed a nice wound right on my knickerline - around where the femoral artery is, ish. Left open & weeping & growing as the split in my fragile skin worsened. I couldn’t actually see it to start with as my abdomen stayed INSANELY distended, but I could certainly feel it & when I asked I was told nothing was wrong. My hair was left to go rancid until a student nurse took pity on me & washed it for me. To the absolute rage of the staff. Eep. A couple of years ago I was on a ward with very lovely staff though & still ended up, after my attempts to find knickers for 95yo amputee in hospital shops were unsuccessful, begging a friend to get some & bring them when she came to visit. Lady in question was in fact mother of one of my daddy’s schoolfriend’s, just to make situation that bit weirder. (She was so very pleased with her knickers, after a moment of embarrassment that she’d confided in me about her lack of them while I was reading her the menu so she could choose her meals the day before [she was almost blind & had severe hearing loss so it took very clear enunciation of the menu choices for her to understand & she got upset if hurried... & our bay’s caterer, while lovely, was not only busy, but dealing with a patient who’d no clinical need to be in hospital & kept making up dietary requirements every time someone arrived on the bay with an actual need, so she was somewhere beyond the end of her tether... still not sure how it was staff had missed that the elderly Hindu lady in the bed opposite me would be best on the vegan diet given she’d forgotten all her English & couldn’t understand the menus/pick something that would be suitable though... really REALLY awkward starting a conversation with her son about it, too, because the staff were lovely & were trying, but they literally couldn’t communicate with her beyond mime; but I couldn’t bear seeing her being given foods that she couldn’t eat & some staff getting frustrated at her not eating things someone had basically randomly ticked... she kept getting hopeful I must speak Hindi because I understood her better than anyone else & I felt so bad having to keep telling her I didn’t... thankfully her consultant did, but that really was just luck!]). Is it really terrible to hope to not need to look after/fight for anyone else & only advocate for yourself? You are probably the wrong person to ask... I know that if I see someone needing help I will [try to] give it. Is it bad, though, to hope for an admission where that won’t be necessary?

If I don’t get up & rescue that advent calendar chocolate it may be left uneaten until tomorrow. That would be a bit sad.

Hope that you’re able to keep doing fun stuff in run-up to admission.

Oh & just how eclectic is eclectic? Mongolian throat singing followed by [thrash] metal followed by musicals followed by Motown followed by madrigals followed by music hall followed by mash-ups?

Seafour · 02/12/2018 22:27

Marievan There will be no pyjama packing for this lady, the only items dh will be allowed to bring into ICU post surgery are my splints, special water bottle, a few toiletries, phone & iPad. Once I've graduated to surgical HDU I hope to be joined by purple bear and Marmaduke.
I will have a central line in my jugular vein with 8 ports on it that will allow for:
Port 1: blood pressure monitoring
2: blood gas monitoring, co2 and oxygen
3: ketamine (continuous for first 6 days)
4: antibiotics
5: antispasmodics
6: morphine pump
7 & 8 are spares
Acute Respiratory HDU is where I go once I'm surgically fit for discharge and when they are confident I no longer need the central line, so not enough pain to need a central line, it's virtually impossible to cannulate me so I need to be able to manage on subcutaneous morphine. That's where the hard work begins, and I get to wear my own nightwear, I will get discharged when I can transfer in and out of my chair, manage catheters and bowels safely and manage on oral medication.

Writing that down has made me feel a bitConfused

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WitchDancer · 02/12/2018 22:54

It's national to have a wobble, even more so in your case, but you can do this. You need to do this. We'll be behind you, praying for you x

Izzy24 · 02/12/2018 23:17

Indeed we will.

Seafour · 02/12/2018 23:30

Somebody asked about updates in the immediate aftermath of surgery so I will find someone to join the thread and post updates for the first few days when I may well be in an induced coma. Otherwise you lot will be left hanging.

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Crownandheelshigh · 02/12/2018 23:49

Will look forward to updates as here to support you but make sure u put yourself first!!!! Xx

MarieVanGoethem · 02/12/2018 23:53

Writing [new] health stuff down can do that. Or saying it out loud. Sorry, didn’t mean to make you Confused

With the complexity of your health needs are they not thinking a port or a PICC might be a sensible step if you’re generally impossible to cannulate? Obviously I don’t mean for this surgery, and I totally get why you wouldn’t be keen on the idea, but presumably you can’t do IV antibiotics at home atm, whereas if you had a port/PICC that might be possible? (Have been told jugular CVCs are “surprisingly ok” by a couple of friends, if that’s any help/reassurance? [Sorry, not sure if you’ve had them before/remember having had...])

You will have us for [virtual] company once you’re able to use your phone/tablet, too. (And what better prospect could there be than that, frankly?) I’m taking my Brownies ice-skating between your surgery & mine, am sure you’ll be desperate to hear about that. (I’m not skating, no... don’t think any of the 13 Brownies going have ever ice-skated; the 2 Guides have been once, maybe twice; my Young Leader’s never been; lucky the 3 adults who’re skating are reasonable skaters... Brownies were DESPERATE to go when we were planning term [but very good, as always, when I said I thought it unlikely we’d manage it] & they also wanted to visit museums [they weren’t fussed which, or rather, they trusted me to pick...] so we’re also going to the Natural History Museum. Some very happy-excited small people as result of this. We’ve been busily providing lots of “firsts” for small Brownie who started penultimate week of summer term & came to the seaside with us the next weekend [she’d never paddled & hadn’t even encountered the word before; she’d also not been away for the day other than with family] & ice-skating is another that she is bouncingly happy about. Not sure how it is almost the end of term & I’ve at least 3 flying up to Guides [mine decided they wanted to do that, so we do...] & 3 more Gold Awards to give out [really Hope County Badge Secretary hurries up & tells me she has those SOON because I’m getting a bit stressed about presenting them & Brownies leaving & making photo displays & also hypoallergenic gold!cakes & ...)

Seafour · 03/12/2018 00:29

Marievan me and jugular central lines are Old friends, the ports get tangled in my hair which is annoying but they're ok.

They always use a Doppler to locate a site to cannulate me for antibiotics, they won't do a pic line because there is a risk of pneumothorax and although small it could kill me If it happened. If I need a week of iv antibiotics it usually means at least five cannula sights as once they've been used a few times the vein blows.

And yes to all but the thrash metal in my eclectic music.

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