get it out! thread 3

[littlemaemae]

I have moved this to child health board as I don't think aibu is appropriate anymore.
What began as a quick question has become 2 now 3
The support on these threads has highlighted the best qualities of mumsnet and I am so grateful to every lovely person who has supported me so far!

Sirvix, I had no advice to offer and I haven't experienced such a loss. But I will be thinking of you.
I am so glad you have been able to share how you are feeling tonight.
Night time can be very lonely when you are going through something so personal.
MN is such a lifeline, there is always somebody about to hand hold.
I am about to drop to sleep but I just wanted to let you know that you are not alone

Delurking to send wishes for a good night's sleep for littlemaemae, and for even-littler maemae. I hope that the weekend stays calm - and that everything moves quickly on Monday. Raise absolute hell if it doesn't.

And SirVix - I lost my father (first) then my mother (a few years later) and I do empathise with how you are feeling. It is like being cut free, though you don't necessarily want to be free, and it's all rather unknown because you have never been in that place before. Suddenly you are the older generation, and that is very strange.

I am glad you were with your mother when she died. That is a good thing, and will help. For now, though, you will be in shock. Be kind to yourself.

Soft Soft comforting (((((((((((((Hugs))))))))))) SirVixofVixHall

You are in my thoughts and Prayers

littlemaemae

More ((((((((((((((Hugs))))))))))))

Hissy (((((((((((((hugs))))))))))))

((((((((((((Hugs))))))))))) bees and Youarentkiddingme and Wolpertinger

Thinking of you to SirVix, so sorry for your loss. It was good that you were with her at the end.

Thanks MaddHugger! ❤️

Thanks MaeMae you should have seen the birthday card he got me not long after the accident, the words were so beautiful, he chose it especially for them and had to ask a woman in the card section to get it down for him as he wanted the card to be a surprise and I wasn't allowed to watch him choose it...

It made me bawl! 😂

Littlemae, how are things today? I hope your DD is brighter than she was yesterday and I'm hoping you get some answers tomorrow.

SirVixofVixHall - my sympathies, I went through a similar situation a few years ago when I lost my parents, it's a strange time trying to process everything, take care and be kind to yourself, nothing prepares you for losing your mum X

Hi, DD does look a lot brighter today and is isn't so puffy so I think her body is regulating itself better. Last night of the prep to tonight. Everyone agrees she has made no progress on it. So the plan is to let Leicester take over tomorrow.
She is utterly worn out but still in good spirits.
I feel like I have been hit by a truck all of a sudden. I feel so unwell I can hardly stand up and feel like I am going to be sick.
Must be the tiredness catching up with me at last.
I have come home to sort DD6's uniform and other bits for the week as I don't know where I will be or what we will be doing

Bless you both, make sure that you eat. Just little meals to keep you going xx

Try and eat well herself. Living off hospital sandwiches/chocolate/crisps will make you feel awful. Try and get some fruit/veg in.
Of course you are going to be tired.
Getting opinion from Leicester is good and hopefully they'll have another plan. Even if Leicester had been your local hospital they would still have had to have gone through the week of NG clean prep etc before they moved on to other things, they won't have magically cured her last week for example so it's still all good.

You can do this x

I don't think I will ever be able to look at another cheese sandwich again. I've ended up just eating the side salads. I love fresh foods I feel rubbish eating stodgy stuff and I've had no appetite.
My dad has made a stew so is going to bring that in for me and DD.
I stupidly had a nap yesterday, I knew it wasn't a good idea. I'm someone who needs to keep going

I found sleeping in hospital very difficult, lots of bings and bongs from ds bits of equipment, and others pressing buzzers in the night, plus the whole Mummy Cat with her poorly kitten bit; they would come in and do their observations every hour and I'd stir, one eye open while they did what they did. He'd stay sleeping, and I'd be half asleep but it's still disturbed.

My love, you've had a terrible time, this is all so much of a shock and you've been so worried, perhaps now that the next move is about to be made your organism is relaxing a bit, because it can. You've been fired by adrenaline and tension.

Have a sit down, just for a few mins, have a cuppa tea and just be for a moment. I came home to collect my car 2 days after we were admitted. I fell to pieces when I got home. So I didn't go home again until he came home with me. He's always been as much my strength and safety blanket as I've been his.

I am so hopeful for you for tomorrow, I can't wait until the news starts getting better.

Thinking of you xxx

No wonder you feel unwell, you have both been through the mill and back. It must feel as if all you are doing is waiting waiting waiting but hopefully tomorrow will see the beginning of the next stage in sorting out your little one's problem. Easy to say but try to find some time to look after yourself too.

Oh my god how is this still going on?

Much love to you both xxx

Thanks for updating the thread. Hope tomorrow brings some relief.

Poor lamb, can't believe this is still going on :(

Roll on Leicester.

Fingers crossed, and sending both of you every possible good wish that this is nearly over, and that your little daughter will soon be back to full health.
Take care of yourself.

Daunting as it is with your exhaustion, I imagine you must be relieved that Leicester are taking over after such a long struggle to get your dd treated appropriately. I hope that the team there will be more understanding and supportive of her needs and yours.

Hopefully the Children's Ward there might have a microwave. I stocked up on nice ready meals when in with dd2 that made a change from sandwiches.

and there are naice potnoodle type meals for which you only need hot water. or those ainsley harriot couscous sachets.
good luck tomorrow. keeping my fingers crossed for you.

OP - just read your whole thread. I hope you all had a better weekend. Do you have friends with children the same age as your DD? Perhaps they could call in a visiting time, it might provide some distraction for you all. It sounds like the hospital have started with the least invasive treatments and now that they don't appear to be working move up to more specialist treatment. I would imagine for many patients the treatment your DD has now had would work but unfortunately your DD now needs more help.
Good luck tomorrow and I hope you soon see some improvement in your DD.

Thank you everyone. It really helps to have people understand how it feels. It's by far not the worst thing in the world and I count my lucky stars that she isn't seriously ill and I am always thinking of families that have been through/ are going through so much worse.
I think I have worked myself up to tomorrow having all my hopes pinned on it, and now I feel sick. I want us to go home desperately, but I want her to get better.
Don't want to be so far away from dd6 at the other hospital but don't want dd not getting the help she needs and this dragging on for even longer.
Fingers crossed that they make a brilliant plan and DD will be better very soon.
I can't cope when I don't know what is happening.
I am such an anxious neurotic person who does everything for my family myself no matter what. I've had to sit back and let my mum and dp do a lot of things that I though 'only i' could do properly. I will probably be a much more relaxed person going forward.

She is asleep now, I'm going to have a nice stir fry dp brought me and try to get some rest.

Good luck for tomorrow littlemae, got fingers tightly crossed for you and dd.

We're all thinking of you and your DD Mae . Anyone would feel anxious under the circumstances, you're doing amazingly well holding everything together. I hope you're feeling a bit better now than earlier. Enjoy stir fry!