All aboard the Seafour tour bus #2

[Seafour]

A new thread for us

Old thread in HDU with respiratory failure and terrified

Thankyou for all the kind messages, I've been reading them to my DH. I'm currently trying to feed a wiggly boy to sleep, but he slept nearly 4 hours in the car to where we're staying for Christmas so is understandably not so tired!

I love the gingerbread houses Seafour, they look amazing! Also this bus is like the thing of dreams. Definitely got a whiff of tardis about it, always wished that was real.

The nausea is definitely kicking in now! It always does start really early for me.

Zebrapig - thanks for the zoo lights. Lovely stuff.

WittyName come get cuddled up in the den. unlike MineofUseless I did not brush Fluffy. It's fine. I think. I hope :)

Sea the bus is such a magical place, I can almost believe that if we close our eyes really tight we can even invite the people we miss the most to come spend a moment or two. I'm spending time with my lovely dad, and dearest of dearest friends. They approve of the decor and the smells.

And are oh so very glad that you chose to stay here with us. There are enough of them already and we can't spare you.

Thank you for the little trip to the zoo yesterday.
I am possibly popping off the bus today - we should be going to see dh friends in Lincoln but we might not be if we don't I'm going to an hospital to give our seafour a real life handheld!

Justanother will you give her a big fat somewhat gentle hug from me?

I'm a wee bit jealous you get to go visit but then I'm really pleased for her and for you. Can you tell I'm a middle child? 😍

@2018SoFarSoGreat
Looks like the Lincoln trip is going ahead so I won't be able to go today :-( small chance I'll be in the area tomorrow (as I've not finished my Christmas shopping yet!) So I'll collect all the hugs up and pass on tomorrow (hopefully, obviously if she is available of course!!)

Good morning buslings I've had a crap night, I was exhausted but 10 minutes after I went to sleep the alarm on my ventilator went off to say I was making no respiratory effort so the nurse woke me up over and over again to see if I knew how to stop it, all I could tell her was that at home we would dial 999. Then they woke me to take a blood gas which is never a pleasant experience so I went into the den and left my wrist outside for the junior doctor to do his stuff, the magic of our bus knows no bounds. The doctor and nurse commented on how calm and relaxed I was while he was digging around in my wrist. Anyway I took to google and found the technical manual and switched the alarm off so that I could get some sleep as it was 3:00am at this point so I've had 3hrs sleep.

Zebrapig thank you for the trip trip to see the lights.

So sad that I won't get to see Christmas for real today but happy that she gets to go to Lincoln. Tomorrow I go home so she will have to come to see me at home next week.

Oh seafour I am so happy to read that you are going home!!!
I will certainly have to sort something out very soon
Honestly that's made my day reading your going home!!!

Seafour is waiting with baited breath for someone to delurk and give me dire warnings about over sharing on the internet allowing complete strangers into her life.
Shall I start composing a witty response now?

Seafour, I am so happy for you. I know how much you didn't want to be an inmate over Christmas.

Seafour, I don’t think you should prepare a witty reply or any reply, you’ve been very unwell and need to focus on healing. Also, it’s christmas, hope you enjoy with your family.

Shame you aren’t having a RL visitor today, but we’re still here. So good you’ll be home for Christmas. Can’t believe you had to google the instructions to turn of the beeping machine! Hope you’re able to catch up on some sleep x

Really glad to hear your news Sea, I hope it all goes smoothly for you.

@MintyT ** thanks for the heads up on the Matt Hampson foundation I'd not heard of it before your post, they are based not far from me and they look really interesting. Thank you.

Now seems like a good time to mention The Great North Run 2020

I intend to enter and complete the half marathon over a number of days, by walking using my splints and crutches and resting (but not moving in my wheelchair). My physio will be my main support along with dh & fabPA of course, we are expecting it to take a number of days for me to reach the bus finish line, but I know you'll all be there to hop off the bus and cheer me over the finish line.

So pleased for you Sea, that's amazing news!

Thrilled to hear you’ll be at home tomorrow Sea! Amazing news.

Cannot believe you had to google for ventilator alarm instructions - 😳😳😳

I’ve been deep in thought this morning pondering this and that. I really really wish for healing this Christmas.

For all of us. For physical healing, emotional healing, mental health healing.

There’s a lot of love on this bus, which is a very good start.
❄️💕🎄

I didn't have to google the technical manual I was just pissed off at being woken every 5 minutes. My respiratory consultant has just come in from home and tweaked the settings, told me I need to get my bmi down to 22 by April - typical man.
He's lovely and obviously very invested in me because I'm so unusual medically but has never stopped to think about the very broken body attached to my interesting lungs.

Morning everyone. Oh no, afternoon already!
Sorry to hear you had an unnecessarily bad night, Seafor Hope you're managing to snooze again now. Thrilled to hear you are getting home for Christmas, fabulous news.
I'm just about to jump off the bus for a little while, off to stay with DD1 for the week, and DD2's coming too (Gatwick drones permitting!) Haven't seen DD2 for what feels like forever, so very excited.
I'll pop back every chance I get to see how you're all doing and to top up your glasses/ mugs of tea as required. Do you think we can all live on the bus for ever?
Love and hugs to you all in the meantime, and the warmest wishes for a very happy, healthy (as far as possible in the circumstances) and peaceful Christmas to you dear Seafour, to DH and FabulousPA and to you buslings, one and all.

You've all been so busy! The lights were lovely, the bus is lovely - beyond words lovely. Loved the gingerbread houses too.

Last band gig of Christmas for me. I need a lyre for tonight, and my lovely dh has bent it into position - back to front!!! Bless him. I'll add a bulldog clip and all will be fine. I how you can hear the carols, if the bus parks at the station, then follows us up the high street from pub to pub then I'm sure you will - p appears to be an alien concept to the cornets 😂

Going home sounds bliss. Are you excited?

It's fantastic news, you going home for Christmas Seafour!

I've been at the zoo today too, along with our scouts. I even managed to bring the relevant number home too.

Your concert sounds nice, I have to admit that Christmas has passed me by this year. I'm looking forward to getting out of hospital but very nervous too. Unfortunately I've been here so many times before that I know it's much harder at home, no nurses on call 24/7 and until the 27th it's just me and dh, we couldn't see it being anything other than extremely uncomfortable having a complete stranger with us over Christmas Eve/day and Boxing Day. It would be awfully uncomfortable opening our presents to each other/eating dinner with her etc. But it's also virtually unheard of to be discharged from hdu straight home, normally there would be a period on a general ward but because of the complexity of my respiratory failure/ventilation the only place that has the 2/1 nursing I need is hdu. My respiratory consultant doesn't want me exposed to the germs on my home ward so I'm being sent home.
Rehabilitation centres were mentioned but again the complexities of caring for me make it unsafe, I have no swallow reflex so eating and drinking isn't safe unless I'm supervised, I'm always at risk of respiratory arrest so again unless there is always someone with me I could die. So rehabilitation centres won't take me unless I have 1/1 nursing funded by my trust but the hospital I'm in is not in my trust anyway. It's like being on a fucking merry-go-round of NHS hell.

Anyway today has been a bit shit, dh is flapping like a hen with fleas because he has so much to do but won't ask any of his dc's for help. He still turns to me for advice, lots of questions and I just want to be in the den at the back of the bus having my hair stroked and brow mopped. I love that he wants to get everything right but I just don't have the emotional energy for anything other than managing my pain and trying to get comfortable.

*Now seems like a good time to mention The Great North Run 2020

I intend to enter and complete the half marathon*

I've not had anything worth saying recently but I have to break my silence for this.

That is absolutely amazing. You are absolutely amazing. Bloody amazing.

Have a lovely Christmas wherever you are, but hopefully it's at home.

Poor Sea. Here. I warmed the towel in warm, lavender scented water and wrung it out well so no dripping. Just close your eyes and let it all go. Shhhhh. That's the way.

Ok. Now that's done may I say I am utterly terrified for you. Are you sure this is the best answer? If it was not Christmas would the same decision be made? If yes, then it shall be done. Your DH is amazing, he can do this with you. I assume Fabulous is with her girls, so can't help. It sounds scary but then so much of what you have to live with does. I wish we could lift some of these burdens ❤️

You do by being here ❤️

Maybe I didn't do a good job of explaining everything - yes if it wasn't Christmas I probably would have stayed at least until after midweek but it would be a shit Christmas for dh and me if I was still here. He's also had the added shit that comes with Christmas anyway and setting up emergency ward 10 in our bedroom with hoists, commode a hospital bed, a dog that's pining for me and just getting his head round what's been done to me. He retired last December and although there have been five previous spinal surgeries he's popped to see me after work, taken a day or two off when I got home and other people got on with caring for me.
It's all been stripped bare this year, hospital appts, the daily grind of being me that he never really saw. Things like going out for the day and having to take a ventilator, suction machine, catheters, emergency resuscitation kit, medication etc it's bloody exhausting. But we're closer than ever and that's good.

There has been joy today too - I had a video call from New Zealand this morning from two insanely cute kiwi granddaughters and their gorgeous mum, gosh how I miss her every single day but I'm happy that she's living her dream in the most beautiful place on earth.