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?

I've just requested email info from the Meningitis Trust on counselling/home visits/one to one support. They look really good.

Someone asked about our health visitor. I saw her in hospital, on the childrens ward the day we were discharged and I don't think she was there professionally unfortunately :(
I've only seen her personally twice since I was pregnant, there's always 3 or 4 different ladies at weigh in clinic and someone else did our 1 year check at home, so I wonder now if perhaps she's not been in much. She seemed lovely as well, she was the only person I seriously considered calling to discuss PND before I chickened out and convinced myself I was fine.

So glad you are home now and that she is really on the mend. You have been through such a lot, it will take time for you to recover, just as it will with your dd. Take things as easy as you can and maybe nap when she does, you need r+r too.

Big hug to you Mud - am pleased you are both home, but completely understand how in some ways this is the hard part beginning. From being lived, you suddenly find yourself in control and that's overwhelming

One thing I did, and wish I had done sooner, was find an outside outlet - I ended up with a lovely lady who did reflexology and Bach blossoms - and while I am not into those kind of things at all, the chance to get out, relax and talk to someone not involved (and to be honest, have a good cry) provided a huge relief, even though it was hard leaving DD with DP, as she too did not want to let me get out of sight.

I can't promise it will get easier soon - but I can promise it will get better eventually. Take care

slight hijack to wave to beautifulgirls - really pleased to hear your DD is doing so well

I had meningitis as a 12yr old and survived unscathed! Glad your DD is on the mend x

Oh Mud you shouldn't be worried about work right now...I am glad you have called the Menningitis trust...I am sure they will have ALL kinds of ways to help you out and get you feeling a bit more in control...even knowing what to expect will help.xxx

Mud , she will slowly get her confidence back I am sure and also her confidence with dh and your mum...so glad things are slowly getting back in the right direction.

Haven't checked in for a few days, but so pleased to hear you are back home.

Every day you will see improvements in DD as she regains her strength, but for now you just have to go with the flow. And don't forget to look after yourself!

Mud I hope you get some backup soon, from the meningitis trust and others. Your dd and you have done so well! Your dd has now to slowly build up strength, get over this episode (physically and emotionally), gain confidence as somebody else already said.

It is good that she will get follow up care from different specialists. It is still very early days, so there is plenty of scope and time for improvement.

Lots of good wishes.

Hi Mud. I've been lurking but just wanted to say how pleased I am that you are home with B. The only bit that I can offer any advice on is that you may be entitled to Disability Living Allowance if the hospital folk think that B may need extra care for at least 6 months. It can be claimed by people who need extra care after serious illness, not just by those who have a longterm disability. This might alleviate your worries about money somewhat and enable you to concentrate your energies on supporting B, whilst also giving yourself the time and space to get over the trauma you have just endured. They can process claims quickly in some situations and I suspect that yours would be included in that. I hope I do not upset you further by mentioning DLA (as I know it made me feel down when I was told to claim it for my dc), but I thought that it might be a weight off your mind to know that there is some financial support available if B needs you to take a bit more time off while she recovers. Your health visitor, or probably the Meninigitis Trust, would be able to support you in filling in the tedious paperwork - don't try and do it alone as a) you'd need a supporting statement from someone such as the health visitor and b) you need to use the right wording to get the allowance. I hope that B continues to make a good recovery and that you get support from all those around you while you try and process what you have all been through. You are in my thoughts often.

I think that your dd is making steady progress and will continue to do so. Its great her hearing test came back normal. I think she has gone through a physical and emotional ordeal and is slowly coming through.
I dont think you are ready to go back to work just yet. I think it sensible to allow for a month at home before going back. Time for you and dd and the family to recover emotionally and time to then have a bit of an idea as to what dd will be like developmentally. It is still too soon. She has only been off antibiotics for 4 days.

Hi back to Oricella - thank you. She is doing fab now thank goodness

Stop - I have sent you an inbox message with the blog link for you, let me know if any issues accessing it.

So aside from a TOTAL refusal to go to sleep today (up 6 or so times last night, up for the day at 10 to 6 this morning (not a time I've seen since she was very little, she normally never surfaces before 7), no nap until around 3pm and even then only for about 40 minutes - just long/late enough to mean she went to bed at 7 but whinged until about 15 minutes ago despite various cuddles/water/calpol visits... today has been a fairly good day!

She seems to have started moving her right arm a little more it's still looking stiff/sore and her movement is still very limited but I'm just so glad she's moving it at all. I also swear blind she attempted a little babble at a woman in Pets at Home carpark this afternoon, but will reserve excitement on the vocalising just yet in case it was a one off or me making something out of nothing!

I've not yet heard anything from the Meningitis Trust having filled in the form on their website on Thursday night but I suppose if I desperately need to speak to someone I can call them. If I don't hear anything by next week I will ring them anyway I think, just to check they have my details.

oricella I'm desperately holding out for DP's days off (he works an 8 night on/6 night off pattern at the moment) next week so I can get to the gym. I found when B was smaller and I wasn't coping so well with being a new mum that going to the gym was a real release for me. That and going to the allotment and helping my dad and getting some fresh air but again that will have to wait for DP's days off as I wouldn't be comfortable leaving B with my mum just yet but I'm sure the time will come.
For the time being I'm just walking A LOT. Again I found when B was little I needed to get out the house every day and just walk somewhere, anywhere. Today I walked to Pets at Home which is about 5 minutes in the car, but 45 minutes to walk because of a detour due to a lack of footpaths on the quickest road route. I figured I could drive, but then I'd have to find something else to do for the other hour and a bit that walking would fill and the plan was B could have a nap in her buggy but it turned out she had other ideas!

Cointreau I am quite frankly SHOCKING at going with the flow but am doing my best to pretend to be au fait with it at the moment!

Survival thank you for that, it is something I'd half wondered about but not really wanted to look into if that makes sense. I'm going to hold off for the next couple of weeks I think and see how things go but it's good to know there may be help there if we need it.

Nerd/funny I'm trying not to think about work but having just taken another £1500 out my rapidly dwindling savings to cover the mortgage etc this month its an unfortunate probability that I will have to go back in the next few weeks, praying obviously that things continue to improve. I'm going to ask about a phased return anyway as there is no way on earth I could contemplate going back fully straight away, even if it is only 16 hours a week most of which she should be! will be in bed for, I'm an emotional wreck at the moment to say the least. If I still feel how I do now and am not sleeping/eating properly, next week I'm going to bite the bullet and make myself a doctors appointment I think and see if there's anything they can do medication/referral wise to help calm me down a bit. I didn't do it after B was born and I knew full well things weren't right then so I owe it to myself to be honest this time I suppose.

beautiful I have the link, thank you :) I've just checked and it does work but I'm not sure if I'm feeling brave enough to read it just yet but I may give it a little try when I'm done here.

I was in bed by this time last night so I will more than likely finish my glass of and head in the same direction tonight I think to make the most of DP being at work and not having to listen to his snoring, shattered isn't the word!

Thanks again for all your kind words :)

Hi Mud, how wonderful that 3 weeks on little B is at home, making slow but sure improvements - I guess it must feel like things are progressing too slowly but wow look how far she's come

Please please be kind to yourself, I cannot imagine how exhausted you must be. Of course only you and DH can know how your finances are but I urge you to stay off work as long as you can - especially if you are not eating/sleeping properly - I agree that a visit to the GP is a good idea.

Wishing you all the best, massive ((hugs)) for you, I look forward to reading further updates on B's continued progress.

xx

beautiful you are going to have me up all night with your blog, what a little fighter you have :) I'm up to Octobers scabathon and am trying to tear myself away in case of another rubbish nights sleep.

I'm so looking forward to hopefully getting B back to swimming lessons eventually too :)

Just checked in to see how you are having not read thread for a while. So thrilled B is home. X

Fingers crossed for a continued, and fast, recovery for your daughter. Look after yourself.

Stop, just wanted to tell you my DD had mening pneumoccoal (sp?) when she was 18 mths. Her most visible after effect was one eye that turned in. She too was very quiet and inactive for weeks afterwards and I worried myself sick about the degree of her recovery.

But the eye corrected itself and she recoverd fully. It took about 6 weeks after leaving hospital to build up her strength and return to normal. I too was an emotional wreck for a while - I think you just have to go through the reaction.

Try not to worry, I'm sure her full movement and activity will return. You are coping really well. Remember, take it one day at a time. Thinking of you all.

Have been following this thread with hope mixed with sadness. You have been to hell and further and now you are on the way back and I am so happy for you enjoy your LO and be kind to yourself.
I am believe it or not I am pleased to write this like pickgo my adopted DS now 13 had pneumoccal meningitis @8 months and it has devastated his life he is deafblind cerebral palsy (severe) and epilepsy. He is so beautiful and does "on body sign language. I wish you and your lovely family all the best.
I hope this does not distress you it is meant to give you hope.
XXXX

Hi Stop - hope you managed to get some sleep last night and weren't up all night reading! DD is such a fighter and I'm sure your daughter is too. One day you will be able to look back on this without feeling as stressed as you do now, knowing that the outcome was positive. Good to hear from others who have been through similar here too. I will send you an inbox message again now with a personal email for one of the meningitis people who was lovely with me, just in case you can't get anyone to respond on the other one.

Just checking back in Mud and so glad to hear that B is home. You must be so pleased...but overwhelmed too.

Hope that each day gets better for you and that B continues moving along the road to recovery.

Evening all,

Thanks pickgo its still so encouraging to hear about people who've been through this and come out the other side and for the kind wishes.

2old I won't lie, I looked up cerebral palsy after your post last night and got myself in a bit of a state and am now trying to stop myself obsessing a little over DD's movement. I'm trying to remind myself what will be will be and stressing myself out won't change anything and she will still be my lovely little B at the end of the day. I'm glad DS brings you such joy and I know you meant well, thank you. I hope you don't mind my honesty but it's fair to say I'm not myself at the moment and could turn anything into something to panic over without a second thought!

beautiful I shall PM you when done here as I'm on the laptop for the first time in a blue moon and not trying to squint at my ridiculous mobile screen!

Cow thank you :)

Well B has found her voice again :) its so, so lovely to hear her chattering away. She's much quieter than she was and has regressed back to just babbling rather than any distinct words but I can in no way complain!

I popped round a friends earlier after the stay and play session I sat in traffic for 40 minutes to get to turned out to be cancelled when I got there and had another friend round to visit this afternoon and B seems to be coming out her shell a little with regards to being around other people. Both were even lucky enough to get a little cuddle from her and I managed an unacompanied wee whilst my friend was here, the first in a while!

She does seem to slowly be moving her right side a little more but is still very reluctant. If you pass her something to her right hand she will now usually take it, which is progress, but she will immediately pass it to her left side. She's also sat kicking her left leg along to music a couple of times today whilst keeping her right leg still....but yes I know I'm over analysing and will just have to see how things go.

Only 2 more shifts for DP and then we'll actually get to see him for more than an hour a day for a few days, this has been the longest 8 nights ever!

... ... I know what I meant!

Mud I am so so sorry I stressed you out it was not my intention I should have worded things differently.
My DS did not have a fantastic mum like your LO. When he was found by GF he was virtually dead and his "wonderful" mother was off the planet having taken masses of heroin. DS was ventilated for 6 weeks and then put in a residential home, I am so sad but so happy that things are hopefully much better for your darling daughter.If only you had been his mum. Once again I am so sorry if I upset you.

Dear stopeatingthatmud it is really important not to be too pessimistic and anxious. I feel so sorry for your little girl and almost it comes across as if you are expecting her to do too much too soon and if she doesn't you think she has cerebral palsy and will be a cabbage for the rest of her days. Its almost as if there are extremes and nothing in between. Perhaps thats not what you feel but thats how it seems to me when ou write. Why on earth were you googling cerebral palsy at this stage? Even a specialist doctor or a physio wouldn't diagnose it right now
How is it going to help you or your dd to be scaring yourself silly like this?

She needs to be able to take little steps to recovery. I cant help thinking two/three playdates in one day is just too much for her. She is a tiny little thing just convalescing. She has only been off antibiotics for a week. She really needs to rest and recuperate and play and babble to you, as well as have one to one with you because being in hospital and on PICU will have been very traumatic for her.
I'm not saying she might not have lasting effects I am just saying she needs you to give her a chance.
There thats very blunt of me I suppose.