Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

I promise I will do individual replies later tonight but I've just jumped on to say that I'm blown away with all your lovely words of encouragement and well wishes.

I've been wrapping presents, leaving instructions for dh, doing some last minute admin but basically I'm just about good to go, I still have a final bowel irrigation to do (lovely I know) and a bag to pack with meds, splints, Filofax(will never give it up) and shiny new iPad.

I'm glad you're loving the playlist, had any of you actually heard of Eddie from Ohio?

I've never heard Messiah but I'll stick it on tomorrow, lie down on the sofa and take some time to appreciate it. I hope to discuss it with you when you're up to posting. What time is your surgery?

Everything firmly crossed here and wishing you the very best of luck 💐 X

Just posting to say hope everything goes well tomorrow @Seafour. Xx

I'll be thinking of you tomorrow. Will put on the Fleet Foxes in your honour.

@Seafour I just wanted to wish you soo much luck tomorrow.
We will see you on the other side!

I love the Messiah, such a beautiful piece.

I wonder if your surgeon will have music or a radio on? I imagine that DD’s surgeon operated in stony silence, and no-one put a foot wrong or there’d be trouble!

I will be thinking of you too Seafour. You are amazing. X

seafour wishing you all the best for tomorrow, will be thinking of you....
I sang the Messiah, with dozens of other choirs at The Albert Hall, just before Christmas, 7 yrs ago....it was a phenomenal experience!
Unfortunately I can't donate blood as I have Vasculitis and I'm on chemo for it ( although I'd previously donated over 20 units when I was younger and have encouraged my dcs to become donors)

had any of you actually heard of Eddie from Ohio?

I'd heard of them!

As so many of you are either going to sing or listen to The Messiah tomorrow I will tell you the story behind my love of this music.

Way back in the 1980's when I was expecting my fourth dc my three eldest were at a lovely school with huge musical traditions, it was November and all 3 dcs were practicing singing and playing in a whole school production of The Messiah due to be performed in our City's Catherdral. In late pregnancy we were living and breathing this music, playing it in the car, at home and almost daily rehearsals.

I had various tracks lined up for labour but it was The Messiah that I put on when I finally went into labour sixteen days late, I kept it on repeat, the dcs got the day off school (I was too busy to take them) and their brother was born at home at 10:10am to "for unto us a son is given".
When he was two weeks old I took him to xxxxxx Cathedral to see the full production, it was so emotional and that music has remained so special to us as a family.

Isn't that a lovely story? The not so lovely bits are; the dcs didn't go to school because the twunt I was married to wouldn't take them. Baby born at 10:10am my lovely GP came to check me and baby over at 1:30pm I was in the kitchen making soup for our lunch, he told me off for not being in bed and asked where twunt was "in bed asleep" he was tired because I'd kept him up all night! Baby was born on a Friday and did his first 20 mile school run on the following Monday.

Seafour I have been reading since the start but couldn’t pass up the chance to say I hope all goes well tomorrow. I found your thread when I was up one night with contractions, and have read and followed ever since whenever I’ve been at a loose end (much of the time in late pregnancy). Here we are much later and I have been sent home being told only 2-3cm, it seems fitting that the baby might finally arrive tomorrow as you are in surgery.

If there is space I would love to hop on the bus, can’t bring cake but can (hopefully) bring new baby cuddles tomorrow, all being well.

Ps absolutely love the Messaiah, have sung it often and have been playing excerpts to the 5 year old as he opens his advent calendar each day, so he gets the music to the verse.

Collette love Jackie Oats, I hope after surgery I will have enough puff to sing

Welshcakes plenty of room for the orchestra and welshcakes

Applesandpears thanks, enjoy the music

Almostfitty welcome, thanks for delurking Shadowfax & yadda too

Janleverton amazing to find a unique blood donee on my thread, thank you so much for what you do. Without people like you I wouldn't be alive.

Justanother I'm sure many a nurse and doctor enjoys being in close proximity to Mr X at work

Nancy thanks, see you on the other side

Mrspotter welcome, plenty of space for all

Justasyouare save me some champagne
Perspick thanks

Bobbiepin you are in for a treat
Crownandheels &Daffy thank you

Mooncup love Fleet Foxes, thank you

Notaflower thank you

Sandunes there will be a medical photographer filming some of the surgery so not sure if they will have music, if it's radio it will have to be radio 3

Bigapple thank you

Havering Messiah in the Albert Hall sounds wonderful

Andro you have to be my music twin because nobody's ever heard of Eddie from Ohio

Gruber a baby being born on our bus tomorrow sounds fantastic, I have been a doula in the past so you will be in safe hands with me. How exciting.

Hello Op. I've just stumbled across your post.
I also have cauda equina amongst other things but can't imagine the position you're in at the moment.
Not sure if you're on any of the Facebook groups maybe a friendly face?
Anyway I hope things look up soon and just wanted to say you're doing fantastic!

Seafour - I heard of them on a trip to America, their music is a style I like (my taste is as eclectic as yours).

I ended up helping at a car accident tonight (years of first aid and I'm a first responder), I ended up holding a lady in neutral c-spine for over an hour while we waited for an ambulance. My shoulders are killing me, but I thought of you and the damage that incorrect/no spinal management can do - I convinced her to let me manage her properly. Most likely she didn't have a spinal injury, but if she did at least I did everything I could to keep her stable.

Juke welcome, no I'm not on any of the fb groups for ces, never thought to look there.

Andro well done, at least she didn't try and go to the pub, which is what I did when I broke my neck.

Someone asked about my user name earlier today, C4 is the highest level of my spinal injury so Seafour, you need to say them both out loud.

Thanks for the username explanation. I'm hoping after this surgery that you pick a new one. That darned spine has not been kind to you so far, but tinnitus it gets another chance to play fair.

I shall have the messiah on repeat. I'm in forrin (Trumpville, to be honest) so am awake when other passengers may not be. I shall go to sleep tonight praying for lovely surgeon to do his best, wonderful nurses to keep him on his toes, and for you to be pain free and safe. I expect my voice to be added to lots of other lovely supporters, and to be heard.

Sending big strong hugs, whether you want them or not. ❤️

Tinnitus be gone! Tonight. I meant tonight 😝

Gosh. Handel's messiah (lovely story by the way - I especially like that twins fave is your EX). I can sing the soprano if we want to make a choir.

Will put it on tomorrow's playlist & think of you @Seafour, sending you lots of positive energy.

So lovely to have such a positive thread on MN.

Twins fave = twuntface

Big hugs and warm thoughts are being sent to you tonight and through the coming days. Your humour, bravery and honesty should be an example to us all. I’ll be thinking of you tomorrow. 🌺

I did promise a photo so here you go, this is me. I can't sleep, but I will be having a big sleep tomorrow, every time I think about what's to come my stomach does a huge flip.

Wow, just read your thread from start to finish. Your one hell of a woman! Sending love and light for tomorrow. Hope it's all as straight forward as possible, your passport and laminated signs are heeded and your ARHDU ready quick smart.

As a relatively modern nurse (qualified 2011) I find much of your story sadly not unbelievable. The tooth brushing thing really grinds my gears and while hands up I don't prompt people at night I always offer to help or prompt as part of my morning drug round as I just know I wouldn't feel clean or ready to deal with the day until I had brushed my teeth so it's just a basic, one that's very often missed. Im sure there is stuff that i miss that is another nurses bug bare. The other "little" thing I cant overlook is filthy glasses. You know the ones smeared with gravy for God knows how long? Have had people look at me like a miricle worker for giving their glasses a good clean.

Hope this stay sees you delivered kind, calm and compassionate care. Will be thinking of you. Have some very un-mumsnet kisses xxxx

Thank you hotsteppa there are so many good nurses out there, sadly they are often the ones who pick up the slack for their less than conscientious colleagues, I see it all too often sadly.

I'm interested to know what you think about a health passport for a patient as complex as me? It's basically a handbook on caring for me.

Personally I would welcome it especially when you have this long complex history. I've only seen them used for patients with learning disabilities or dementia or other difficulties meaning communication can be a struggle. The reality of ward based care means your nurse has no chance of reviewing your medical notes in any depth or getting to grips with the complexities of several overlapping conditions on your average early shift. A potted history of your medical back ground. specifics "red flags" to look out for eg please take it seriously if I show these signs ..... have previously been indicators I may need ..... . Your social history , who you live with pics of family. I particularly like the picture guide for positioning and splints. I know splints and similar are sometimes left off if people don't know what they are doing with them thinking they could do harm if mal placed. I think when you have been through the mill with the "system" of the NHS like you and your family have you can must be primed for the next fuck up and feeling you have to observe and oversee to make sure things are being done correctly to preserve your safety and peace of mind.

Unfortunately, it can lead to you being labelled as demanding, or some staff may feel threatened, like your teaching them to suck eggs. In my experience it's like people in any setting, a few are just dicks and there is no accounting for them but most will be open to getting to know you and your needs even if some are a bit defensive at first, taking your direction as criticism. Again everyone is human and no matter how decent a nurse or hca we will all have been guilty of being patronising, thinking we know best, not listening properly as we are not totally present in what we are doing. Im truly sorry for those times, it's not ok and I hope you can give me another chance to be better next time our paths cross. (Understand this is more related to interaction and rapport than following specific instructions to keep you safe!)

The other thing that stood out was when you said about being left to your own devices for bed time routines etc. Sometimes the conversation goes like "Oh her husband comes in and gets her ready for bed / helps her with a wash, that's how she likes it" and So in essence you are left to get on with it and the nursing/hca staff don't argue (one less thing to worry about?) But we , patient and hcp, miss the opportunity to build the trusting relationship and don't get to share the experience of how you like things done. Hope your fast asleep by now, I definitely should be !!