All aboard the Seafour tour bus #2

[Seafour]

A new thread for us

Old thread in HDU with respiratory failure and terrified

Good morning my lovelies. How are you Seafour (and the Fabulous Pa)?

Beautiful starry skies this morning, not bitterly cold, just nicely fresh. Had a weekend of carols, and got the tree up here, the house finally looks and smells festive. Dd2 has made oodles of paperchains so I'll pop some up in the bus. Dd1 finished school on Friday and is planning to make gingerbread men while the other two are at school, so expect there will be gingerbread men on the bus--yummy

Hi All

Not a great weekend for Seafour!!
Left to fall asleep without the ventilator being put on as they didn't wasn't to disturb her resulted in Seafour slipping into unconsciousness again, thank the lord for the DH arriving and putting her straight on the ventilator!

Haemoglobin was down to dangerous levels again and had to fight for a transfusion and was only given 1 unit instead of the 2 that was needed.

Lots of dick shit doctors here this morning, having not even bothered to read Seafour's notes, totally frustrating for her!!!

However one fabulous thing to report is Seafour's brace is now fitting perfectly and she is currently sat eating a very dodgy looking portion of macaroni cheese

Great to hear from you PA. and really good to hear that seafour is up and eating
I've just walked DDog, it's nice and sunny here.

Great to hear from you but oh my goodness the stunning inability of your team to actually communicate with you or each other is mind blowing....

Bit of a grey day here so just pottering through.

For the very first time I have done most Christmas shopping online. I’m amazed at how easy it is but also feeling guilty that I am contributing to the decline of the High Street shops.

(Bliss not to have to queue for parking, queue in shops or find out that the very items I’m looking for are not in stock though.)

So glad to hear from you both,
The hospital is really acting incompetent! Thank God for your lovely DH!
I'm not having a great MH day today :-( least the day is nearly over however.

Are they lazy, careless, arrogant or just incompetent?

Glad things are better now, but I'd have lost my temper by now!

Jeez, what is wrong with them? Weekends in hospital are often a bit chaotic. Thank goodness DH arrived. I did worry that no news meant bad news. I hope the macaroni cheese was good, the best comfort food in the world IMO. Might have to make some for dinner even though my daughter dislikes it. Here's hoping for better days so you can get home ASAP. x

This is just ridiculous. It’s staggering how many issues there have been
Thinking of you all

I am now craving macaroni cheese, thanks PA! On a more serious note, are you going to speak to PALS when everything has settled down? They cannot be allowed to do this to anybody, it's shocking.

So glad to hear an update even if not all good news. I am sat here by the Christmas tree with fairy lights on and a tiny baby feeding and snuggling up to me. The tree is a small potted one this year but heavily covered in tinsel, baubles and tree chocolates by the 5 year old!
Down here on the south coast it is mild although the wind reminds you it is still december. The sky was clear but it’s still about 8 degrees. Walked up to school to pick up the eldest and it was so nice to feel some fresh air on my face.

@Seafour hope you are on top of the pain and that there aren’t any more cock ups from here on in. Hoping you get a good nights sleep ON the ventilator.

Oh im having such a rough day and I'm not feeling the season this year but i found the Andre reiu Christmas around the world concert on tv, children singing Christmas carols that cant fail to get me and then they came on in Christmas hats how absoloutly wonderful itd on YouTube too if anybody fancied a watch.
Is other people feeling of the season?
Seafour I hope your feeling a little better this afternoon bless you

good lord, this is going from the sublime to the ridiculous! Can they not figure out by now that if she is not ventilated she will possibly die? That is such madness. I can't imagine how there is not a giant note, all in caps, in bold font RED LETTERS stating same. I am so sad that this continues. We may need to set up a watch list.

Sea am sending you strength and love. And want some macaroni cheese now :)

It seems utterly bizarre that they can think she doesn't need to BREATHE for a while? It all smacks a little of "oh she just likes to make a fuss". Grrr!

Oh @Seafour - I can't imagine how you're feeling at the moment. How frightening to have to rely on these people to keep you alive when they keep making such ridiculous mistakes.

So glad your DH arrived when he did.

Thank you @Thefabulouspa for updating us. I was getting worried I admit. Obviously, only update when you can or want to. I don't want us to add to your burden.

I'm just going to pass round some champagne flutes, poor some fizz (non alcoholics alternatives are available), and raise a toast:

To @Seafour, the bravest, most inspiring woman of 2018. May she enjoy her macaroni cheese, find something in the day to laugh about, and be home safe as soon as possible. May we all continue on this bus ride for as long as she needs us.

I'll drink to that 💕

To @Seafour, the bravest, most inspiring woman of 2018.

Absolutely.

Can I flag the bus down please? I have got armfuls of sunflowers to bedeck it with :)

Have read the whole thread and am in awe of your bravery and resilience, Seafour, and hoping that your fabulous consultant has read the riot act to the stupid doctors.
Thank goodness for your DH and wonderful PA.

It's dark here now (obviously) but the dawns this week have been wonderful - full, pinkish skies turning blue, criss-crossed with fresh contrails and the occasional seagull. We have been doing what we call "dragon breath" on the way to school and looking at the tiny ice crystals on the leaves. The DDs love to look at the "ice leaves" on my car too (I have a black car, so frost, and alas dirt, show up well). DD2 has been singing Jingle Bells since about October, only because she is 3 she has got a severe case of Misheard Lyrics and it comes out as "jingle bells, batman smells, robin flew the wave, onut farm tissue why onna one us opay HAY". Or something.

I hope the mac cheese was good and the pain is under control. Here's to you

Cheers to our Sea, the bravest, most inspiring woman of 2018. AND 2019, goddamittohell to all of you HCP's who seem hell bent on proving otherwise!

Another one drinking to you and your recovery. It is utterly unbelievable that despite all the info and experience they have they continue to put you at risk. I do hope this leads to a full review of your treatment not only so that you get an apology but so others do not suffer the same in the future. One cock up is vaguely understandable but these repeated examples of bad practice are unacceptable. Sleep tight.

Hi everyone,

Shall we deal with the downs first so that we end on a positive note:

There is a shocking lack of consistency between high level medical professionals, their opinions, their ability to listen to the patient or each other. Some examples of this are:

* the Consultant on duty yesterday was insisting that I start Zomorph, the same drug they tried to kill me with on Thursday 	last week.

* me having to remind doctors daily that I can't walk and only have use of one arm, somehow that combined with being 	articulate and intelligent causes no end of fucking problems.

* There is no other ward in the hospital or my hospital near home that would take me because my background nursing 	needs are too high but today it's been suggested I move to a rehabilitation unit where the nurse patient ratio is 1 nurse to 	12 patients.

* The Spinal fellow who saw me today does work for Mr Dishy but wasn't one of the chosen few who operated on me and 	doesn't know me. He met me once last week but today came along and said 

DS "you should go home tomorrow after having a standing X-ray today" (yesterday I stood once for 30 seconds before passing out.)
DS "you should be mobilising more, why are you not mobilising more

Sea: "it's probably something to do with doctors trying to kill me with inappropriate drugs and an orthotic brace that the physio wasn't happy with because it didn't fit and not having essential items of equipment at home."

DS "it's fine to mobilise without the brace, it's just for going for long walks when you get home, you should be walking around the ward several times a day."

Sea: "what am I the Christmas fucking miracle"

DS pulls hideous shocked look on his decidedly not Dishy face

Sea: "you have read my notes of course so you know that I was paralysed by a doctor in this hospital in 2010, but if only someone had told me that I'm not paralysed anymore I would have gone home last week " adopts resting bitch face"

DS tries deflection "you know abusive language isn't tolerated"

Sea "but paralysing patients through bad practice and ignorance unfortunately is, you do know that insulting disabled people is considered a hate crime, I don't tolerate being insulted very well at all, right now I feel very very insulted"

DS "you can mobilise without the orthotic "

Sea "not according to your boss"

DS "no he has written in your notes mobilise as able, go home with fully fitted orthotic"

Sea "wrong you've missed some of it out"

DS "no"

Sea "yes, you recognise Mr Dishy's signature"

DS "of course"
Sea "and the one next to it" waits for dick shit to dig a deeper hole
DS "one of the other fellows"

Sea ”wrong, because it's mine because I come across doctors I don't trust ALL THE TIME, your boss invites me to sign everything he writes about me because he treats me as an equal so I know it says mobilise as able on the bed, orthotic to be fitted on day 3/4, fit checked and adjusted as required, must go home with fully fitting orthotic. Under no circumstances should Sea leave the bed for any reason without the orthotic. Orthotic must be worn for six months post op, Sea will tell spinal team when she is ready for X-rays. So thank you for putting

DS (completely ignoring what I've said, turns to nurse) please book X-ray as soon as possible and contact orthotic department.
Sea wants to shout after him FUCK OFF TO THE FAR SIDE OF FUCK YOU TWUNT

Nobody woke me for my 6:00am medication - all of my meds are time critical
For the fourth time one of my medications ran out, it was a 6:00am med so it has to be taken 2 hours before one of the 8:00am meds. I got it at 7:45am

I will let Fabulous PA tell you about the physio terrorist damaging the skin on my feet and legs tomorrow

The awesome bits of today were:

My orthotic carbon fibre brace fits perfectly which the physio took out on me. But I'm hard as nails and took her humiliation well.

My DH had to get his hands down my gown and lift my very ample breasts up in order for Mr Othotist to fit my orthotic. Sea is looking forward to tomorrow very much.

DH and PA brought in my big electric wheelchair

I walked a few steps

I sat in my big chair for 3 hours

I have eaten well

The dgc Came to visit yesterday

The equipment I need could be at home as soon as Thursday

I need a bus chant of get Sea home for Christmas please.

Keep posting I am still reading.

Fucking hell I'm sure you are raging after all that. Passing you the . So glad you are giving as good as you get - but sorry that you have to, in the first place.

I'm crossing everything that the equipment can be at your home for Thursday! Get Sea home for Christmas please!!!

Grrrrr hate making mistakes

Thank you for putting yourself in the firing line, I will take great delight in telling your boss how you have treated me today and I shall give him the names of the witnesses here who I'm certain won't lie about what's happened today.

here's my chant.. in song form, you know the tune:

Get Sea home for Christmas
She can count on us
We’ll have the right stuff, to give her puff
And all of us revving the bus

Christmas Eve will find her
Where she’ll be safe and well
She’ll be home for Christmas
Or we’ll kick up merry hell

She’ll be home for Christmas
She can count on DH and FabulousPA
They’ll have the right meds and oxygen too
And DGC over to stay.

Christmas Eve will find her
Bossing from her big chair
She’ll board the bus, with all of us
And we’ll delight that she’s finally there.

Am I too late to join the bus, Seafour? I've been running behind for a couple of weeks, but the thread moves on before I can catch up! I have yule log and mince pies for everyone.

Just wanted to clink a glass to you and theFabulousPA and say that I, too, am in awe of your strength and courage in the face of such adversity.

So glad to read that today has had some awesome bits, but I'm speechless about the level of arrogance and ignorance of so many of your HCPs. I just can't believe that so many people refuse to read your notes or to listen to you or Fabulous, even when they are told that their planned course of action will likely kill you!

Anyway, I hope that you are getting some sleep now, and that they manage to GET SEAFOUR HOME FOR CHRISTMAS

Sea home for Christmas!