Really poorly dd.. any words of comfort /advice appreciated

[DJAngel]

DD has been ill since xmas day.. high fevers snotty,coughing loads and most awful thing for me is that she has basically been asleep since xmas night with a few wakings to see GP/ Dr in hospital yesterday and to give drugs.. currently on usual anti-convulsants and anti-biotics initially for chest infection and now for tonsilitis spotted by dr at hospital yesterday. Her breathing is a worry, sitting by her bed have just managed to give inhalers and that has helped a bit I think but still 45 breaths a minute and should be 25-30.

She vomited her anti-convulsants up earlier too.. spoke to the hospital who advised to try again later on..

She's been needing to have ibuprofen and calpol to keep fever down, and even with that fever is till 38.5.

Her chest sounds so wheezy. Has never been diagnosed with asthma really despite being given inhalers but looking like she may have it..so GP says..

I'm so worried. Think I'm going to spend yet another night in her room making sure she's breathing ok.. Great way to see the new year in. Her sleeping is freaking me out, some of you may remember that she just doesn't normally sleep! Since xmas day she's been so hard to rouse. It's awful to see her like this. The medics don't seem concerned by this.. has anyone else's dc been so wacked out by flu? We're having to give her drinks propped up in her sleep so she doesn't get de-hydrated!

I know some of you deal with far worse than this everyday but I think because of her Tuberous sclerosis background I'm frightened that she will not be able to fight this off.. Irrational probably but feel she's so poorly..

Worst of all- it's ds's 7th birthday tomorrow and he's been so good and today was so upset that he's hardly seen me this week and now I can't go out with him as planned tomorrow coz I need to be with dd. She has been sleeping on me since boxing day and if I try and slink away for a pee or wash she cries.. Feel so bad for ds..

So sorry for long ranty post, in a mess really and so tired as well.. Thanks for reading.. Here's hoping for an easier new year for us all..:(

Oh you poor thing and poor dd. It sounds very similar to when ds2 had pneumonia, it was really serious and encapsulated by the time they got him into hospital. I was, like you are, absolutely furious with the doctors that hadn't listened to us.

I'm not surprised you haven't had any rest, what with the constant obs checks, uncomfortable bed, noisy hospital and all the stress and worry on top. Hope you managed to get some sleep this afternoon.

I'm afraid I don't know anything about seizures etc, but I do know that ds didn't move or speak for almost two weeks. He barely acknowledged I was there, just lay and slept or rolled around his bed completely out of it. The anti-biotics he was on were so awful as well that they gave him awful diarrhoea, until he was just passing yellow foam and his poor little bottom was red raw. I kept asking them to try a different type of antibiotic, but they wouldn't even consider it and he was just skin and bone by then. The consultant was consistently so rude to me that dh actually went to patient liaison about her. She was convinced I only wanted to get ds out of hospital so I didn't have to worry about going into labour (I was 8 1/2 months pregnant with a breech baby and had originally had a c-section scheduled for that week, but cancelled it and stayed with ds instead). Then at the last minute a different doctor suggested they try a different antibiotic and he started to improve rapidly within 2 doses! Honestly some of these doctors think they are gods and parents are there to be ignored and condescended to.

When he did start improving he had regressed quite a lot and went from being a typical nt 4 year old boy to an oversized toddler and a very angry one at that - which was a real shock for us, as he is normally a very placid gentle and compliant child. He was emotionally all over the place for a while and totally regressed to using two word sentences and baby talk and being very demanding (eg want drink, my toy, watch Thomas, me do it etc) to get what he wanted, tantrumming when/if he didn't get it and refusing to do everything from taking his medication to brushing his teeth. It was horrible, it used to take two of us to get his follow up antibiotics into him.

He also needed a year on the SN register at school, as he unlearned/lost everything he had already learned at school and had to be taught everything again, right from basic letter and number recognition upwards. We were told that this is common with serious pneumonia type illnesses where there has been prolonged seriously high temperatures and/or uncontrolled/uncontrollable temperatures. A few months after his recovery his hair started to fall out and we were told this is another common reaction and a definite sign of the enormous amount of stress his body had been under.

The reason I'm telling you all this is that it may just be similar with your dd and nothing to do with seizures. Also, he is now a typical nt 6 year boy with no lasting health, mental or emotional effects. He has caught up in school, his hair has grown back and although he did catch pneumonia again the following winter, that time the medics took us seriously straight away and put him on mega antibiotics which chased it off pretty quickly.

I really hope she turns to corner soon and makes a rapid recovery.

I will be thinking of you both and sending lots of love and light. x

I am so glad you went back to the hospital

You will get through this, just one day at a time. And you know that melatonin has a ridiculously short half-life, so won't be making her sleepy today.

Just going back to hospital now.. dd has apparently been very sleepy but did say ' home ' which is really good news! Thanks so much for you post moosemama. I'm so relieved that how she is right now is not necessarily any indicator of how she'll be when she finally recovers - and if an sn child like dd regresses then we're talking back to being a baby.. it has felt a lot like being with a non verbal baby ( but a strong one who needs to pull tubes etc out! She will absolutely be hating all that stuff on her. I can't even brush her teeth normally.. ) so better brace myself.

Didn't sleep, couldn't settle but laid on bed and rested. Now heading back.. thanks all for your support..

Got to try and think positively and just get through tonight. Dh can do tomorrow night but has a work thhing cannot miss tomorrow so needs to sleep himself but I can come home tomorrow. Just be nice to be away from the very stressful environment..

I hope she has turned the corner!!

Been thinking of you and your little one all day, so thought I'd pop in and see how she's doing.

Really hope she's made a big improvement today and will be home soon.

Just popping home to pick up son and put him to bed then back to the hospital to relieve dh.. thought I'd update.. SHe has been less sleepy today although not talking yet. We tried her on avocado ( her fave ) and she ate a small amount but bit worried coz her chewing and swallowing seem a bit strange but hoping thats just coz she not eaten for days. She's still got the NG tube and needing oxygen .. It's gonna be a long haul..

But the shock of today was that she tested positive for swine flu. We are now in isolation nursing and no kids to visit etc. Bit shocked and stunned. We did not have her vaccinated because of the worry about her epilepsy, but it didn't sit comfortably, as it never does on this issue. I don't want to go through this again though so I think next year we will have it. Feel very scared about how ill she was. Saying that I did ask the GP if she could have it and he said no there were no cases in our area..

Anyway, it's been a better day really and she seems a bit brighter if very regressed and disorientated and still quite away with the fairies bless her. Off to watch TV with ds who needs a bit of Mum tlc so better get off here..

Thanks for all thinking of dd..

Am pleased to hear she is improving. If she's anything like ds2, she will take a while to get back to being her usual self. Ds was watching/staring at cbeebies on the hospital tv long before he started speaking to me/us.

Ds struggled to eat properly for a while afterwards. It was literally the occasional mouthful of something extra tasty here and there and he flatly refused to drink anything other than the odd sip of Tesco's Apple Juicy Water for a few weeks. I suppose her NG tube will make swallowing a bit odd as well though.

Hope your ds is bearing up. Ds1 found it really tough when ds2 was in hospital, as his whole routine was changed, basically his life was in total upheaval. He was being picked up from school by Grandma, looked after and fed tea at her house, then brought home in time for dh to put him to bed, then Grandma would be here in time to take him to school in the morning, so dh could get back to the hospital asap. Not good, as he has ASD and thrives on routine. We also found out quite a while afterwards that he had been terrified that ds2 was going to die as well, but didn't know how to articulate his worries.

Ds2 was in an isolation room, but mainly because they had so many infectious diseases on the ward that they were worried I might catch something dangerous to the pregnancy. They swung it for us by claiming they thought his diarrhoea might be Noro! It was December 2008 so before Swine Flu reared its ugly head. I think I preferred it in isolation though as it was quieter and we had more privacy - which was good as I shed quite a few tears, which would have been horrible on a ward. It also meant I had my own toilet, which was very useful at that stage of pregnancy.

Scary to think that it was Swine Flu, but better to know why she was so ill and like you say, at least it will help you to make decisions about vaccination etc next year.

Anyway, I should shut up rambling on about us now. I actually just wanted to say I'm really pleased and relieved for your that she's improving. Here's hoping she has an even better day tomorrow.

I'll continue sending love and light to you all. x

heart goes out to you all-
well done you for being so strong
hang in there
x

I don't know, wish I did x

It's good you are getting some rest and I'm sure the staff wanted her to have some rest after 10hrs of that so dont feel bad (and they wouldn't have given to you and given it if they thought it would put her back a lot)

Hope she improves soon x

How's she doing DJAngel. Been thinking of you all.

Really hope things are imporving for you, hope she's feeling better xxx

DHAngel, hope things are looking up for you.

Well we have come home from hospital today.. It's been a very stressful few hours since we came home. She is loads better than she was, and was getting stir crazy in hospital and the brighter and more alert she became the harder it was to look after her in there. Having said that, since we got home she has been so grisly and just laying on me very restless..

We have come home with an NG tube which is pretty stressful coz it takes 2 of us to do it.. She also has chronic constipation/ impacted now - to resolve, so giving movicol.. she's not interested on food or drink..

Worst of all - she still seems to have some problems that are worrying me and I just hope they will improve as she gets better and better. e.g. Seems to be having trouble chewing and swallowing ( but may be out of practice?) and forming / saying words seems really hard for her, and she isn't really saying much either which is such a shame coz her language was really picking up a bit..

Neither does she seem able to walk..:( It's as though she is drunk, staggering about needing full support and she seems to have no awareness of how wobbly she is.. not slowing down or holding on to stuff for support etc. We have to wait and see but am worried there's been some kind of neuro damage, either from some sub clinical seizures that may have gone on or is it possible that her brain was starved of oxygen that night we were at home coz her sats were so low when she was admitted?

I feel quite traumatised by the whole thing. There were some very scary times in there..

To cap it all, my poor ds who's 7, who was completely neglected tonight ( whilst I looked after a crying dd and dh tried to get the feeds sorted and food cooked for all) and told me when I put him to bed at 9.45 after dd had settled that he hates every minute of his life. He cried his heart out saying I was always with dd and he has nothing to look forward to and he was mean to dd before she went into hospital and feels mean.. He said dd doesn't love him..

It has really upset me and I feel so bad for him. Tomorrow won't be any better as I'll be tired again and dd very poorly still.. He's got homework to do for wednesday and hasn't done it, and I feel bad coz I always do it with him.. What can I do to help him through this.. Trouble is - today I agree, life is pretty shit..

Feels very black today. Of course I'm pleased to be home and that she's so much better but wonder about the other issues for her and worrying about my ds who is normally so sunny and chilled out.

Not tonight.. bless him.

Thanks so much for asking after us.. Really appreciate the support from you all.

Wailing moan over now.. :(

Sorry to hear that things are so hard for you at the moment- hopefully DD will pick up soon and maybe you can do something special with ds,so he has something positive to look forward to - You sound exhausted and I expect you are really doing a very good job in a very difficult situation.(re the wobbles and the talking-she hasn't been eating,so her energy levels will be low;hopefully everything will be o.k. given time)

DJ, I really feel for you. The whole thing sounds very similar to when ds2 was ill, except to cap it all I had a baby three weeks after he came home from hospital.

I'm not sure re the chewing and swallowing. I do remember ds found it difficult to eat anything for a good while though. He also barely said anything - except NO! and the occasional 'want'. He's nt, so his speech wasn't a problem previously. He came home from hospital the week before Christmas iirc and I do remember we were still worrying if he was going to be eating properly and talking above the level of a two year old a couple of weeks before he went back to school, mid January.

He also could barely walk, he just didn't have the strength or coordination. We had to carry him everywhere, to the toilet, up to bed, downstairs in the morning etc and to be honest his strength was slow to return. If he did try to walk too far/fast his legs would literally give out underneath him. Not surprising really, as they were so skinny and weakened they looked like matchsticks that might snap if we weren't careful with him.

Poor ds as well. My ds1 was 6 when all this happened and it hit him very hard. He also has ASD, which made it harder to gauge how it had affected him. My memory isn't all that clear after dd was born, but I know that we decided to buy him a Nintendo ds a year earlier than we'd planned, as a reward for being such a good boy and to make up for what a horrible time he'd had. We also planned some days out to his favourite places when ds2 was well enough. Ds1 got to choose where we went and we planned it and wrote it in on the calendar with him. We did the Sealife Centre and Conkers and visited some friends he loves, but we hadn't seen for a while. We even did a 3 hr drive to the seaside in February!

Could you perhaps take him out somewhere fairly soon for a treat with just you, while dh has dd? It sounds like its you in particular that he's missing. It doesn't have to be anything major - perhaps a trip to buy a toy/game he's wanted for a while or to a cafe for a huge ice-cream sundae or piece of cake and a milkshake? It would probably do you the world of good to get back into the world for an hour or so. I remember it feeling really odd when I finally got out after being in the hospital and then being ds2's nurse at home, but I definitely felt better afterwards.

As far as the school goes. I spoke to the Head as well as his class teachers and asked for him to be excused homework until things settled down a bit. We agreed they'd still send it home, but that he didn't have to complete it if it was too much for me or him.

Have you thought of seeing your gp to ask for some counselling around the trauma. Seriously, it would really help you to be able to talk openly about it all with someone, these things tend to fester if you don't let them out.

Hang in there - you've been through hell, but you've done the hardest part and things will start to get better now. It might be slow progress at first, but you will get there.

I really hope you all start to recover from this awful time in your life very soon.

All the best. x

hi DJAngel
I've only just seen this as we are in the middle of moving. Sorry you and DD are having such an awful time. I hope it gets better for all of you soon.
Take care

Just read this and wanted to say thinking of your dd, hope she improves soon

Thanks so much for all kind words of support. Especially moosemama, it has been really helpful to hear that your son took a long time to recover. DD has regressed significantly but I think today she does seem much brighter and is smiling lots more and seems able to have a bit more balance.. although she is still very wobbly. She seems happier in herself, she is currently laughing at the Teletubbies!

She has the NG tube which she has pulled out every night in her sleep, and this has been awful coz the community nurses have had to called every day since we came out to put it back in. She goes ballistic each time, kicking and screaming. She was so upset this morning dh was quite tearful after.. Any tips on how to keep it in? May do another post about this..

The NG tube is there mostly for fluids coz she won't drink any..we need to give the movicol now going up to 6 sachets a day as not really working yet. She has dreadful nappy rash and yet we are forcing diarrhoea to empty a very over filled and impacted bowel. Saw the x ray at the hospital today.. need to sort this problem.. looks bad.

Anyway, we are all knackered. Ds has his party at local soft play place on saturday and wants me not his dad to go with him so I will. He seems a bit less upset and angry but keeps having nightmares and spending half night with me!

AAhh.. oh and to cap it all.. DLA renewal forms haunting me.. They'll have to wait!

sorry you are having such a nightmarish time, but glad she is improving.

Good to hear she's improving and has been smiling/laughing, I remember feeling such relief the first time ds2 laughed after we brought him home. I think it was a good couple of weeks at least, so she's way ahead of him on that one.

Sorry its all still so hard for you all. We didn't have a ng tube to deal with, as ds would sip fluid - as long as it was Tesco Apple Juicy Water! It must be horrible having to get it reinserted every day, for you and her. We had a similar problem with his cannula in hospital, lots of kicking screaming and having to be held down - both dh and I cried over that.

Also feel for you with the impaction and overflow situation, this is something else that ds2 suffers with - although its a recent thing for him following three d&v viruses in a row. He's currently on 3 sachets a day and still sobbing in pain on the toilet and in bed every night, so its looking like we'll be taking him up to 4 this weekend.

Hope ds has a lovely party and it helps bring his anxiety and stress levels down. It will probably do you good to do something different for a while as well.

Its my dd's birthday party tomorrow as well, so you can tell him all the best people are having their parties this Saturday.

Hope things continue to improve and you can get rid of the ng tube soon.

We're now on to 6 sachets a day as not much was happening. In the last couple of hours a lot has been happening! It's gonna be a long night. The house stinks! TMI probably!

Your poor ds moosemama, hope he gets more comfortable with the increase to 4 sachets. It must feel horrible mustn't it!

Hope your dd has a great party tomorrow too!

I actually can't wait to get out and get some fresh air and a change of scenery tomorrow.. Ds very excited which is nice too.

I don't know if you posted about the NG tube anywhere else and I haven't seen how old your DD is.....anyway the way that we kept the NG tube on was with a tear-shaped piece of duoderm on the skin with the pointy bit right up near the nose. The tube was then secured with the same shape of tegaderm on the top. We then had a thin curvy shape of white surgical tape (like micropore but I can't remember its name) which just fitted around the edges of the main patch. We replaced the white tape every day and it was a good line of defence which came off before the whole tube got knocked. We also put a little circle patch to secure the outer end nearer her neck. Then we put thin gloves on - taped shut with surgical tape overnight. We managed to keep some tubes passed for about a month this way. Hope this makes sense!
I hope that everything improves soon - hang on there.

Thanks for that advice Boboma. I'll experiment along those lines tomorrow. I suspect it will be gone by the morning as it looked very loose tonight as the duoderm was coming off from nose side. She is nearly 5, but is so strong even having been so ill and screams and kicks if you go anywhere near her face or nose now..

I have left it til tomorrow and put tight socks on her hands to see if that does the trick again.

Have a feeling we'll be visiting the ward again to get it put back in but will try what you describe.. Thanks for that!