Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

[cupofteaplease]

Thanks to Thumbwitch for inspiring the title of this new thread.

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

Yay for cuddles with the girls x glad things are more positive for bea xXx

Glad Bea enjoying her milk again. Hope you enjoyed your night with friends, and all the cuddles that made you feel better :)

I'm pretty sure Beatrice's tube is on the move again as she keeps vomiting more bile than usual. However, I'm hopeful it will stay in place at least until Friday when we are already in Oxford for the hospice.

I haven't weighed Beatrice since her hospital stay, but she's feeling fairly substantial

I went and did some training at work yesterday, was good to use my brain a little, even if only for a couple of hours!

Older girls are having a super week- we went to the library last night in pyjamas for a bedtime stories session, they were very excited to be out of the house in PJs!

Today I went to a work friend's for lunch. Whilst talking the subject of 'life limiting' conditions came up. It occurred to me during conversation that perhaps people think Beatrice is 'just' disabled, but she'll be alright. When I gently explained that one day, she won't be here, my friend looked a bit shocked and sad- I think it's a hard concept to grasp isn't it? I know I don't really understand it. I'm not in denial, but I don't tend to think too far into the future...

I am glad your girls had a lovely time.
Boo about the tube though, fingers crossed it behaves until Friday.

Yes, it is a hard concept to grasp x

people want to think the best though x

hope the tube stays where it is

I really hope the tube stays put.

I'm glad you've had a nice lunch and enjoyed going into work.

Stories in PJ's sounds great! I'm glad your girls enjoyed it.

Your girls should come and live with me for a week - there is a lot of PJ outside the house action (playing outside, popping to Tesco - although only in my more sensible PJ's, and to get petrol )

I hope the tube stays put

I think it's an incredibly hard concept to grasp. Especially as Bea (who by all accounts must be one of the easiest little ladies to fall in love with) has defied the odds so many times already and come back fighting xx

How's the Teaset this week, cup?

The term 'life limiting' is such a difficult one to understand both for parents who find themselves in this situation and for those around them. From a 'service' point of view (ie hospice, community nursing) it gets lumped together with children with 'palliative care', which most people associate with conditions such as incurable cancer.
My DD is 17 and has a life-limiting condition. All through her life we have never dared think about how long she might live, and there have been many times when we have thought "Is this it?", when she has been very poorly in hospital. But she is still here and will hopefully reach her 18th birthday in the Autumn - but her condition is still 'life limiting', because we can be fairly sure she will not live anywhere near a 'normal' life expectancy.
I sit as a parent rep on our local Palliative Care Steering group and I still get confused about the terms used and which children they cover - as I might add do some of the Commissioners!
Have you come across the "Together for Short Lives" website (used to be known as ACT) which is the association for childrens' palliative care.? They have lots of information for both families and professionals. You might find something there to help those around you to understand.
Hope you have a good weekend at the Hospice - and that the tube is behaving itself!!

Having a rough time in Oxford hospital, after Beatrice was blue lighted here from the hospice on Thursday. I'll explain when home, but for now can I just say how terrifying it is being in a strange hospital with staff who don't know your child's complex needs- I barely dare leave her cot side.

She currently has no tube in, with no plan to pass another- communication here is beyond poor.

We are in a shared ward, despite pointing out several times that she is at high risk of infection.

Husband at work all weekend, phone reception so poor I haven't been able to conduct a conversation with my girls since Thursday. No visitors, no phone calls, not even a tv to distract me. I think this might be the hospital trip to break my spirit, I was sat crying last night, haven't felt so low in a very long time.

Oh no.

Can you just keep repeating to everyone who comes near than Beatrice needs to be in isolation as an infection could kill her and that she needs what she needs. Can you call the hospital who were so good before and gave you 24/7 access?

I could put a call out for Oxford MN to bring supplies/give company??

Oh cup

Is there anyway you can be transferred to your 'usual' hospital

Sending ((((vitual hugs)))) love and my positive thoughts xx

Oh cup I don't know what to say other than we are all here or you and sending get well wishes and positive thoughts to you and beautiful bea. I cannot imagine how you must be feeling x lots of love and I hope the hospital sort themselves out sharpish and start caring for you and bea properly. Seeing mn strength to help you battle through xx

Cup I'm only 40 minutes from oxford if you need anything (whether it's shouting at hospital staff, supplies or just company) just shout xx

Oh cup

I KNOW.

I really do. You need your small comforts (tv, tea,) and you need to have people around who know your Bea and what she needs. You also need off that main ward and into a room.

I know its hard to but you have to kick up a big fuss. Is a transfer to your usual hosptial possible?

I used to phone our specialist ward and beg them to get us out of the general. They usually did all they could to move us.

Shout if you have to. Tell them you spend half your life in hospital and its NOT OK to be stuck on a ward with no tv and your Bea at risk of infection.
It doesnt matter if they think you are pushy.

I wish I could come and sort it out for you x

Oh darling girl - what can we do to help?? It's a shame you couldn't post sooner, I'm sure there's an MNer nearby who could bring you some bits and pieces at the very least?!

What have they said about a trf to your hospital?

Can anyone (ie DH) contact your hospital and get some action?? Or at least get them to move Bea to her own room??

If there is anything we can do, just say!!

Sending bucket loads of love and strength to two of my very best girls xxx

Cup I don't think I can say anything that others haven't already said but we're thinking of you.

Is there anything the hospice staff can do to kick the ward staff into giving Bea her own room and to improve communication for you?

I second just fab's comment about sending you an oxford mnetter to help you or at least give you someone to talk to?
I can't imagine how hard it must be to be apart from your older girls and your DH but hang in there. You are the strongest person I know and you will get through this.

Oh cup

I really hope they communicate with you and move you to a room or your hospital soon.

Your in my thoughts and prayers as usual.

Cup, sorry to hear you are in hospital again. It is so much more difficult when you don't know anyone and they don't know you/Bea.
Can anyone from the Hospice come down and sit with Bea to give you a break? When DD has been admitted to hospital when she has been staying at our hospice, the hospice send the same member of staff to the hospital who would have been allocated to DD in the hospice. At least then you can get a break knowing she has 1-1 care.
Demand to know what the plan is re the tube. It is aways more difficult at weekends when there are fewer doctors around. Only you can make Bea their priority through pester power.
Hope you get home soon.

We are all here Cup. You aren't alone, I'm nowhere near you but if there is any help I can give from a distance I will.

I think Mrs D is right on the button (as usual). Kick up a fuss, do anything that will keep your spirit burning bright for Bea.

Thinking of you. MNers often say 'sending love and strength'. I'm not really sure what it means in reality, but if it works at all then that's what I'm doing

x

Poor Bea & Cup, hope you get a transfer to your normal hospital, or at least a room of your own. In my thoughts and prayers xx

Oh Cup, thinking of you and Bea. X

Oh Cup, thinking of you and Bea. X

Cup - sorry I'm not near enough to come and help about and kick up a fuss - because I would..! Keep asking and fighting but also try to get some rest - you need all your energies for the fights... Thinking of you xx

Prayers for you Cup and of course for Bea. I feel both sad and angry at your current situation in a shared ward in a strange hospital. You and lovely Bea deserve so much more, without having to constantly fight for even something as important for Bea as her own room.