Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Everything here crossed for you and and many best wishes too.

Seafour I've been following since the start of your thread but your last couple of posts about being difficult to cannulate really resonated with me. I am terrible too - difficult to get them in the first place and then they blow easily as well. My right hand is permanently slightly swollen after having cannulas in it having my first child. In that same experience the midwife asked anaesthetist to put one in my foot and he refused saying I need to be mobile but offered to put one in my neck instead (he knew very clearly what he was doing as you've never heard a midwife say no so quickly!). He was am amazing man and I was fortunate to have him at the delivery of our second DC nearly 3 years later and he remembered me. This may have had something to do with the fact that I was an EMCS both times due to pre-eclampsia; the first time my blood pressure was the highest they'd ever seen and so high (approx 250/140) that they had to draw extra lines on the chart to record it. The second time was 21st December last year, my EMCS was scheduled for me to be on the table bang on 8pm to coincide with all the shift changes (nurses, drs and neonatal). We were in theatre and even he struggled to get the cannula in, having to admit defeat and use green rather than grey.

My experiences got worse, 10 days after DS came home from a 3 week stay on the NNU over Christmas I was admitted with a horrendous kidney infection and what I later found out was urosepsis. I was discharged after 5 days, spent the weekend in agony and on the Monday rang the gp's for better pain killers. They insisted they needed to see me, I burst into tears in the receptionist as there was no way I could walk the 500 yards to the surgery, never mind get DS there too. In the end DH came home from work and took me there in my pj's, coat and ugg boots. The nurse practitioner took one look at me and sent me on my way to A&E. I spent an awful night sat on a chair in A&E, in such pain, unable to urinate for 13 hours because I was so dehydrated. I got there at 6pm, was triaged at 9pm and shoved back out into the waiting room because they were so busy. I sat there until I finally saw a dr at 4am and they found a bed for me. It was one of the worst nights of my life, I was so ill. I remember them struggling to cannulate me in A&E, at one point they had the bed tipped upside down and were trying my foot too. Later on in that stay it took 8 attempts by 3 different people to get a cannula in and on my penultimate day one of the phlebotomists failed to get blood after 3 attempts and proceeded to throw a strop, saying it was my fault for moving my arm (she'd left one of the puncture wounds dripping blood and I was trying to put pressure on it to stop it). I heard the other phlebotomists talking about what a cow she was afterwards.

Oh dear, that turned into a very woe is me post, sorry! I really need to try and get some more sleep before I have to try and get up and juggling working along with looking after DS who has chicken pox. Luckily we're both fine now and looking forward to celebrating his first birthday and 'proper' Christmas after our traumatic start to his life. I'll continue to follow your journey as I find it inspirational how much you've come through and with such dignity. You give me inspiration for what's to come for me in the future but I won't bore you with that now!

Seafour, you are awesome. I think your story should be compulsory reading for all doctors. I won't go into my own story other than my GP didn't listen to me but I am still here because DH did and knew something was very wrong.

Take care and thank you for telling us your story. Keep going. .

Good morning, Sea

Fascinating about your cannula - and Mel made me well up. I can't find the words to say what a fantastic thing you did for that young couple. I would come and visit you once you're allowed visitors, but I don't think you'll be at my local hospital, guessing from an earlier post.

I have my own NHS horror tales--centred around camhs. It took 5 years to get ds his dx. In that time they made 2 social services referrals - I saw one after I complained, they referred to me as a refrigerator mother. They also ignored everything I said, and having seen the history of dv, concluded ds had an attachment disorder. No looking at the child holistically. Sorry, I'm quite garbled, and even now I get so cross.
Funny thing was, when I met with the lady handling my complaint, it turned out to be someone who used to go to the same church as me where I grew up, I played with her daughter! Made for a very odd meeting.

I can't remember her name, but i would love to take my Brownies ice skating! Sadly it would mean mk, and it's a bit far. I'm going to spend today attempting to source small pieces of wood following a change of plan in the programme. Youngest child is off school with the lurgy, she's so hot and needs to sleep.

What are the todays plans for other travellers?

Countdown to surgery 3 days, today I'm very conscious of the fact that they could be my last three days on earth. Sounds dramatic but the stakes are high. It won't be the seventeen hours of surgery, it will be the anaesthetic and subsequent ventilation issues. The letter written by my combined consultants says 70% chance of life threatening complications in the first 72hrs.

I have stuff to do and my brother is coming to visit this afternoon.

Oh Sea I can't even begin to imagine how it feels with your surgery so close. But if the power of Mumsnet is anything to go by then you have hundreds of us sending you all the positivity and luck in the world.

I don't post much but I do read all your updates and I'm determined that I'll still be reading your updates when you get out of the other side of this and are recovering comfortably.

We're right here with you. After all you've got through so far this'll be a walk in the park. Would talking about what your surgery involves help?

You’re immensely brave and strong. Wishing you luck for your surgery.

Here listening. Sat at home with ill youngest. Not that she needs me - she's fast asleep and that's the best medicine.

Have you persuaded your awesome PA to sign up?

You’re certainly not walking alone Sea.

You don’t sound over dramatic in the slightest. You sound extremely aware. Which is obviously different- how could you not be aware especially because of everything that has happened already.

However, for that very reason, you’ve made sure all your i’s are dotted, your t’s are crossed and your belt and braces are firmly in place.

I hope you have a good day with your brother. I have a dearly loved younger brother but for reasons that are sad, complicated and really so stupid I rarely see him. I miss him.

I’m doing a lot of tip runs today (Christmas!) and looking forward to Saturday’s crossword and a cuppa in front of the fire when I’m done.

Just wanted to say hi and say how amazing I think you are. I've been reading this thread for a while, I will be praying for you. When I think about all you have overcome, and despite your own problems how you have helped others, I'm just in awe.
Would love to jump on the bus, I also know what it's like to have a horrendous time in hospital. I was induced for reduced movements with my son, it is still harrowing to me how one of the midwives told me I should just have a c-section because I was getting upset about the (ridiculous) amount of internal examinations I was being subjected to. Bear in mind I'm a victim of DV and sexual assault, and most the examinations were less than gentle shall we say. Thankfully I did manage to have a natural birth in the end, but not after being starved overnight and having a particularly upsetting night. I just remember having to wash in the bath the night before and sobbing because I was so alone and everything was awful. I'd been in for 5 days at that point, still had a further 2 days once DS was born.

God bless you lot, I can't emphasise how much your posts mean to me, so for all those lurking or reading along and not posting, please do. I read every post and each one makes me a bit stronger, a bit more determined and all the hurt caused by the people formerly known as my friends fades a little bit more.

I don't mind talking about what I'm having done. The first part of the surgery last year was to correct a side curve in my spine, this was done with minimally invasive spinal correction, it's my surgeons speciality.

Part two is to correct a forward bend and to create a lumbar curve as mine doesn't exist.

I'm tricky to anaesthetise because my neck doesn't move very much, gases can't be used because of my lungs and it's difficult to get drugs in because of my overused veins so I'm sedated and whilst on my ventilator they do my central line. The sedation is to stop me cracking jokes with the anaesthetist while she slits my throat, I'm told it's off putting.

Before surgery begins, I have electrodes screwed into my scalp, more electrodes stuck into arms, hands, legs, feet. The consultant neuropsychologist will monitor electrical impulses to my arms & legs throughout surgery to ensure I don't lose any more function than I already have.

The first part of the surgery will be to remove the metalwork in my lumbar spine, including the rod and screw I broke in a fall before my last surgery!

Part two is creating a lumbar curve by removing wedges of bone from five vertebrae and then cementing & screwing them into the shape of a lumbar curve. The wedges of bone will be popped into a blender and whizzed up with some cadaver bone to use with the cement.

Part three is dealing with the forward bend, he thinks he will need to break two vertebrae in my thoracic spine to achieve a better shape, more cement and screws. The whole of my spine from T8 to S1 will be fixed with Harrington rods which have to be shaped on the day to follow the new shape of my spine. There is a possibility he will need to go higher than T8 but he's hoping not to.

Depending on how stable everything looks at this point he may add two long angled rods from T10 to the top of my pelvis to give me some more trunk stability.

Never before will so many men and women be involved in giving seafour so many screws nuts, bolts and rods.

I think the general aim is that I come out the other side looking as if I've got a poker stuck up my arse.

I will never bend from the waist again and if he cross braces I won't bend sideways either both are a huge disadvantage if you live life in a wheelchair as I'll never be able to pick anything up off the floor again.

Joking aside, bringing me round and getting me breathing again will be the dangerous bit, it always is which is why they may keep me in a coma.

They have theatre booked for 24 hours but it's expected to take between 10 and 17 hours.

Piece of piss for someone with superpowers like mine, I can breath without a diaphragm and if that's not impressive I can grow human beings and I did it five times.

The awesome PA will be signed up tomorrow, I've tempted her in with the "Penis Breath" thread and talk of penguin bollards but I knew I had her when she asked what a Penis Beaker was. She will identify herself with a secret handshake, bottle of zoflora and very long legs.

I've been reading your posts since last week and feel humbled by your story. Wishing you all the luck in the world for your surgery and recovery.

The sedation is to stop me cracking jokes with the anaesthetist while she slits my throat, I'm told it's off putting.

Genuinely made me laugh out loud. Your sense of humour will get you through if nothing else will! How long is recovery expected to take?

I’m amazed how much you have had to deal with. I’ve lurked and read all posts but have 2 questions if you don’t mind.
What does PA mean and what do they do for you? I know it’s not what us office workers would think but I must have missed the explanation.
Also my uncle has a respiratory mask he has to wear at night as he has sleep hypoxia apnea. Is your mask anything like that?
I hope everything goes well with your operation and look forward to your updates.

Seafour You're amazing. Your strength of character, tenacity, humour, bravery and wit (amongst many other attributes) make your posts a compelling read.

I've been lurking from the start but thought I'd pop over and officially say 'hi' and add to the numbers on the bus!

Wishing you the very, very best for surgery this week.

I've just found this thread and like many others, have been blown away with your strength and tenacity. I will now be following your progress all the way. I truly hope that the surgery will bring you some relief.

This is going to be a very busy bus......

Hello!
I’ve been reading through your whole thread in the last few days with my mouth hanging open .
Your story is astonishing, it would most definitely be a novel I would read (hint, hint!)
I admire your courage and your strength so much. I don’t know if it would help you to know that as well as this thread helping you, it’s also helping me and undoubtedly others too. It’s certainly put my very small problems into perspective and made me realise that when there’s a fight to be had we can all attempt reach down inside ourselves and find the necessary resources.
I wish you all the best in getting ready for your operation and coming out the other side with a bod that works better for you.
Ps, am happy to sit anywhere on the bus, such lovely people abound on this thread.

Body

@Seafour you are one of the most remarkable human beings I have ever heard of.
Your strength and poise is an absolute credit to you.
Wonderful lady I wish you all the luck and love in the next few days and respectfully ask for a seat on the bus (ideally not with the kids but at this point I'll hang on to the back of the bus if that is where you put me)
Good luck!

Bobbiepin happy to be able to brighten your day.

Worriedmum PA = personal assistant, what does she do? Everything I can't do for myself and so much more besides. She is first and foremost responsible for checking, cleaning and maintaining all of my medical equipment. She cooks, cleans, shops either on her own or with me depending on what's required. Kicks serious ass with doctors, nurses and the doctors receptionist. Runs my diary, is my confidant, friend and when required saves my life. In return I pay her a shamefully small amount of money, give her sage advice when needed and make her piss herself laughing every single day. I have however failed to teach her how to do a resting bitch face, it will appear yet again in a workplace appraisal as "a target she is working towards"

Masks for apnoea are many and varied, every time a new one comes out the technical gurus in lung function seem to try it out on me. I have three requirements from a mask, comfort, good fit and being able to wear my glasses. A full mask gives a good fit overnight when seeing isn't a priority, I don't find them comfortable. Nasal pillows are the preferred method of ventilation but because of my head pain issues and the fact that I mouth breathe are no good overnight, great during the day because I can eat and drink in them. I have a fairly new one which is a mouth and nasal pillow combination, doesn't always fit well but is very comfortable. I was given that a couple of months ago because of my skin cancer.

*I forgot to tell you all about the skin cancer........
*
I was diagnosed in June with two basal cell carcinomas, I've had light dynamic therapy to burn the bastards off, I find out in the new year if I need radiotherapy. In the grand scheme of things it's no big deal. I had a very scabby face for a few weeks, it hasn't left a scar.

I am invincible, I'm happy to take whatever evil is thrown at me, I have God and Mumsnet on my side.

Toomuch welcome aboard, take a seat, grab a glass and buckle up for the ride.

Just2more thank you for the lovely words and welcome to our bus, I have to agree that there seems to be a particularly lovely bunch of people on this thread.

I'mnotaflower reading your words made me feel warm and fuzzy inside (not trapped wind, I promise). Welcome aboard, plenty of seats, plenty of food, plenty of drink and endless supplies of tampons, tissues and tenna lady as required.

My brother has gone home, it's odd to feel so comfortable in his company when we found ourselves on opposite sides in my mother's "divide and rule" dictatorship for over fifty years. It's nice to have a brother, even better to have a brother who has found love so late in life, I just hope it's not so late that he doesn't enjoy everything being in a relationship means if you know what I mean.

Admin tomorrow morning, baby dgs to be collected from nursery at lunchtime and his two half siblings from school so that they can all have tea together.

Applesin prayers very gratefully accepted and the lovely words in your post too. Welcome aboard the bus, plenty of room for all.

Thanks for your answers. Again I would like to wish you well for your operation. You have been through so much and are still here (I was going to say ‘standing’ but that is a tad insensitive).

FWIW my mum and grandmother both have had basal cell carcinomas which needed no further treatment than being cut out/burned off. Fingers crossed it's the same for you.

Just popping in to say I'm still here and will be reading but not posting for a day or two as my ops tomorrow @Seafour ur so brave but ur writing is so quirky! Hope ur surgery goes ok! Xx