my perfect littlr girl is in hospital with meningitis

[StopEatingThatMud]

And I'm really really scared.

Is anyone up to hold my hand and tell me it'll be ok?

Greeat to hear about so many improvments! The little dear is very tough by the sound of it...I hope her line is out by now.

So we came home last night.... And I've done noting but cry and be utterly useless ever since :( DP is back at work tonight (he works nights) and I don't know what I'm going to do without him around.

I don't even know why I'm crying half the time! I'm just finding it so hard seeing B in her home surroundings looking so weak and frustrated at not being able to do the things she wants to do. I didn't cope brilliantly with having a newborn who couldn't do anything for themself and now I feel like I'm back there again except this time I have to watch her get so frustrated because she knows what she needs to do to sit unsupported/crawl/stand but her body won't let her.

I'm still worried about her right side. DP keeps telling me its going to take time but I just worry she's not going to get her movement back. I can't put my finger on what it is about it that worries me so much, I think I just hate the thought of her not being able to do everything she might want to.

I wish she'd make a noise too, it seems so quiet at home now :(

I know I have to be patient, I really do, but patience has never been my strong point!

Mud - the crying is you feeling safe to "let go" now, which you probably didn't feel able to do in the hospital. I'm sure you will be able to do things for B as normal and yes, it will be harder to see her being so different in her usual surroundings but with a bit of luck it will accelerate her healing.

Is she supposed to go back for physio to help with the R side weakness at all?

I am so glad you are home and please not be so hard o yourself.
It is really, really important that you allow yourself to process the awful trauma you have been through.
Cry as much as you need.
Go over what has happened and talk about it to friends and family.
Please take it from me- it's really important.

Are you going to get visits from the community nurses?
Have you been referred to the local child development team?

Your little girl is still very young so there is lots and lots of potential for improvement. Physio can help and if you can get referred to Portage that would be great too.

Deep breathes, early days and your worries are normal and natural

Mud you're traumatized lovely....it's very normal....you're beggining to feel the after effects of what was a terrible thing!

she's on the road to recovery and you will naturally begin to fret over that process....you need to speak to the doctors now about your concerns but rest assured that your DD sounds just fine to me....she's TINY and she;s had a serious ilness...one which she fought like a lion by the sound of it....she has a line in her arm....as you said a big one too!

Her arm won't be feeling right to her and she is probably exhausted too....give it plenty of time before you expectyourself to feel normal again....you u wont forget this tme but you won't always feel so terribe either. xxx

Mud the Mennigitis Trust offer some support services to people who've been affected here they can do home visits and advise and discuss your worries...I didn't check but maybe they have a phone service where you could talk and get some comfort.xxx

yes there is a 2 hours nurse led support number you can call....they might be able to give you some advice and just be there to understand what you're gong through now.

24 hours! Not 2 hours!

That is good news that you are home and mud as others have said all those emotions are just coming out.... Hope that you do get the support and help that you need and that little B gets back to herself.

Mud, so glad that you and B are home.

What you're feeling sounds totally normal. Exactly how I felt. You've had a huge amount of stress, you're exhausted, you still have things to worry about, and suddenly you've been thrown into a "normal life" environment, and no longer have the safety cushion of doctors and nurses monitoring your DD, and very few domestic matters to deal with.

Do find someone to talk to. My HV was really very good (she'd been notified anyway by the hospital about DS2's meningitis - I assume yours will also have been?). She basically treated me as if I had PND (DS2 was very tiny so I was still at a "high risk" time for it), although said that really she thought it was a kind of reactive response rather than actual PND. SHe came round twice weekly, then weekly, for chats for about 6 weeks. By the end of that period I felt ok.

The very practical advice which the HV gave me and which I'll pass on in that hope that it's of some use was to prioritise sleep, food (especially iron-rich food / iron supplement) and exercise for me. I started taking a walk in the fresh air every day, trying to eat proper meals and getting some early nights. It did all seem to help a bit.

Go easy on yourself. I am so glad that B is making a good recovery.

I agree with the others Mud - It's totally normal to feel like you do. I pretty much lost the plot completely when dd came out of ITU. Totally held it together through it all then it all came crashing down. You haven't had time to properly process it all and now you can you're bound to struggle. Just take each day as it comes and take any help offered so you can both recharge your batteries. x

If it helps, a friend's little girl broke her arm at a similar age and even when the plaster was off and all was well refused to use it, or even bend it for about 3-4 months. Mother was convinced there must be something seriously wrong. Just her memory said that it hurt if she used it, so she didn't.
Hopefully B's reluctance to use her arm is similar to that.

Thank you everyone xx

Thanks especially for the meningitis trust details, its more helpful than you'll know, to know there's someone there if I have a wobble in the middle of the night when DP isn't here.

Had a better afternoon but still feeling delicate especially as DP has gone to work now so will post again tomorrow

Hi Stop - I have followed your thread and am pleased to hear you are now home. We went through similar last year with DD#3 who was 19 months at the time. She has septicaemia, spent 10d in PICU, 11d on the renal ward after needing dialysis and lost half her right foot due to tissue blood flow issues. Coming home was relief but then all the stress of the previous three weeks came out. I think also you aim to get home and subconsciously feel that once that happens everything will be back to normal. We then hit the reality of ongoing multiple hospital appointments and surgery for DD's foot issues. I literally didn't return to work for 3 months from the time she first got ill, and from there now a year on we still have to see medical professionals regularly. My point? Well this is the point that the adrenaline stops for you and emotions are finally able to get out. Give yourself some time, do sit and cry because afterwards you will feel some of the stress has released a bit, and make sure you just hug your daughter more often than ever! Time will continue to make improvements here for her and for you. The meningitis trust are brilliant and very very helpful so do call them and get some support. I don't know if it is your sort of things but I wrote a blog up after she left hospital for the first time to "tell" her story properly. For me it was therapeutic but might not be the sort of thing for everyone. (If anyone wants to read it inbox me).

As for my DD - well she is fantastic now. She runs around despite the foot issue, her kidneys are doing well but being monitored still and for the most part she is a healthy 2.5yr old. I can still cry just thinking about it all though. Be kind to yourself - you have all had a tough time too.

Glad to hear you are home. I hope you are getting good follow up support. I am sorry to hear you are worried about B's movement on her right side and lack of speech. Did the hospital provide any reassurance before you left?

Look after yourself as much as you can.

so happy to hear that you're both back home. Just because you're home doesn't mean that you won't have up and down days - she isn't fully recovered yet, the doctors just think that she's well enough for you to manage at home, so don't be hard on yourself - you've been through hell and back :(

Mud you have had such a rough and stressful time, it is totally normal that you feel upset and that everything is starting to get to you.

Try to get some support, from meningitis trust/GP/health visitor and also friends and family.

It is still a worrying time for you and dd, but she has done so well, she has come from so far. Also try to keep thinking about the positives and all the things she is already achieving.

However, do talk about your concerns and seek help/specialist advice. Did the hospital check your dd's hearing before discharge?

I hope you both have a good night. Try to take things step by step, you have both done so much in the last week or so.

Mud? How are you and B today?

Well done Mud and B! Been lurking since the beginning. Darling, no wonder you are crying, what an ordeal - you just held up so well. No idea about the movement issues but would lay money that the sense of dread that you have is related to the mysterious turns B took - she sometimes seemed to get better but then would have a worrying blood test or a turn for the worse - so it's not surprising you aren't completely zen and won't be until she's all better. And you were the first to spot the fitting, so I bet you're carrying a burden of responsibility as if it depends on you to spot stuff. That would add up to a difficult situation and of course you are knackered already. It's hard to imagine how you would relax or cheer up in those circumstances.

Anyway, so happy for your progress this far, hope she's fine, lots of love.

I can't tell you how happy I am that you and b are home and on the mend. I hope she continues to recover, and wish you well for the future.

You must be so drained from all you've been through, I just can't imagine. No wonder you are feeling so emotional and weepy, you have lived through an utter nightmare. You've been so brave. Sounds like your dd is progressing all the time and hope the positive news keeps coming. Hugs x

So glad to hear she is home. Look after yourself.

beautifulgirls I'd love to read your blog if you wouldn't mind sending me the link? I think writing this has been a little therapeutic but I don't think I'm ready for a whole blog yet, if I ever will be. I don't know if I could even read this whole post back yet but I guess that will come. Your daughter sounds like a little fighter, I hope things continue to get better and better for her.

dikkerdejap she had a hearing test before we left hospital which was fine. She has to have another in 3 months I think. She should have an appointment next week for repeat blood tests to monitor her red blood count and I assume her infection markers as well, although they were down to 22 (from 300+) the day before we left hospital so hopefully they will be normal by now.

I also have to get her weighed in 2 weeks and call the dietician with her weight because she's so small. She seems to have resumed an almost normal appetite in the last 24 hours which is fab and I have a couple of days of follow on milk left which MIL bought while we were in hospital and then she will be going back onto cows milk, at the dieticians advice.

She will have a consultant appointment in 6 weeks I believe and as I understand it will see a neurologist (from Addenbrooke's but who runs clinics at our local hospital) at some point too. I have it written down on her discharge letter but don't have it to hand.

In terms of physio, they want to wait and see how she recovers on her own before referring her for an appointment. I will see how she is by the bloods next week and if I'm still not happy I'll be pushing for an appointment while we're at the hospital.

Today has been... long. I think in a funny old way this is almost the hardest part so far. In hospital you're sort of cushioned by all the nurses, doctors, pharmacy full of medicines and machines that can tell you what's happening. It's the sense of not knowing that's so so hard. Will she be ok? Will her movement return? Will her speech return? Will there be any long term effects? And no one can tell me any of those things, its just a case of waiting for an undefined amount of time...and worrying.

Because her movement is limited at the moments its almost like having a newborn again (which I wasn't that great at first time round!) because there's so many things she can't do. Only this time she knows what she wants to be doing, sitting unsupported, crawling, standing etc and is getting massively frustrated that her body won't let her and she doesn't understand why and of course she's considerably heavier which makes doing lots of things one handed interesting!

She won't let me leave her so I have no idea how I'm going to go back to work, but having just taken 12 months mat leave, including 3 months unpaid and only being back at work 2 weeks money is tight to say the least, so its something we're really going to have to think about soon even though work aren't pressuring me in the slightest and have been great. I only work 2.5 hours Mon-Thurs evenings and 6 hours Saturday daytime so I won't be away from her long, but at the moment she literally screams even when her dad tries to take her and 50% of the time my mum puts her to bed when I'm at work as DP is working too. I had to take her with me and attempt to balance her on my knee and wee yesterday as she got so upset when I tried to leave her with DP :(

She was in bed asleep by 6pm tonight so I'm anticipating an early start tomorrow so will probably be in bed soon myself!

Lots of hugs to both of you. I think it is something that takes time to recover from. of course we want them to be immediately better, to reassure us, but it doesn't mean she won't get better.
Hopefully you'll both sleep well and deep tonight and a better day tomorrow.