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Original poster

need help keeping dd out of hospital

27 replies

kreamkrackers · 11/02/2006 09:24

dd always ends up in hospital everytime she has a cold as it develops into a chest infection, however mild it is back in to hospital she needs to go. she has a very complex cardiac condition and whilst on the ward they told us to never give her cough medicines as we need her to cough to clear her lungs up. without cough medicines though she coughs and is sick and soon dehydrates. she is also peg fed and even if i put her on to a slow continuos pump (say 10mls per hour) she still manages to bring it up along with all her medicines, so she has to go in to hospital for iv fluids. i was just wondering whether i should put her into a steamy room or rub baby vicks onto her chest as i want her to get better instead of going back in to hospital but i am worried about anything i do making things worse. she's 20 months old. the most annoying thing is that she should be put on to antibiotics as soon as she gets ill but the doctors don't like to do that although the hospital has told us she needs to be put on antibiotics stright away.

OP posts:
Potty1 · 11/02/2006 09:35

Have you ever been shown how to do chest physio? Not very helpful for you now but worth seeing if you could get some instruction for the future. Your cardiac liasion might be able to help?

Is your cardiac hospital the local one or different? Is it worth going along just to get some anti-b's if your GP won't give them (sounds like he needs a stern letter from the cardio). We have open access at our local so can just pitch up at any time.

Hope you can keep her out of hospital though - they end up just catching something else whilst there don't they?

Original poster
kreamkrackers · 11/02/2006 09:44

unfortunately it's not our local hospital, about 40 minutes away in the car and i don't drive and as it's the weekend my family members who normally drive for me are at work. she's had chest physio done to her but i've never been shown how to do this. the doctor's here are really bad at giving antibiotics out to children, last time dd was in hospital she required three different lots of adult doses of antibiotics to get better so they should listen to me but they don't. dd is always put into isolation when in hospital as she has digeorge syndrome i always push for this to try to stop her catching everything else going around, but she does often catch stomach bugs once in there.

OP posts:
chapsmum · 11/02/2006 10:01

Think chest physio could possibly help, if done at the right time, to help her cough before she eats or even teaching her to use deep breathing as a way of clearing her lung, I know shes prob to young to understand completely but its a good time for her to be forming coping methods.
Is she on dexamethasone?
Cough medicines really dont do very much anyway. the ones that contain ephidrinewould be bad for any serious caridac condition.
IS she able to swallow? and has she seen a speach and laguage therapist?
Dont see how baby rub could be bad or steaming for that matter.

chapsmum · 11/02/2006 10:02

sorry ment to say has a feed and not eats

Original poster
kreamkrackers · 11/02/2006 10:17

we have now been told that she can swallow liquids but she's still not keen. she does have baby food but doesn't have much and can only handle very small lumps. never heard of dexamethasone. she does see a speech and language therapist but we've not seen her for a while and waiting now for a new one (we have a physio to help her move and the same things happened with her too). i'll put some baby vicks on her now to see whther that'll help.

OP posts:
cupcakes · 11/02/2006 10:21

I don't know anything about this condition but it does seem a problem that the gp is hesitant to prescribe antibiotics if the hospital thinks that's what she needs. Could you get the hospital to liase with your gp to make them aware of her special circumstances? Ideally it should be a situation of shared care between the hospital and gp.

Chandra · 11/02/2006 10:23

The only thing I can suggest is a humidifier, vicks is NOT, aparently, for children under 2. But considering the heart problems of your DD I would look for a more specialised advise as it has been already suggested.

My sister spent half of her first three years in hospital with chest infections and the only things I can suggest are to keep her indoors as much as possible, keep her chest warm and use the humidifier as soon as she starts to have problems with her chest.

Chandra · 11/02/2006 10:24

Oh yes... and the antibiotics, most important bit of all.

chapsmum · 11/02/2006 10:31

If she is having probs swallwing it could be that she is partially asperating, (liquid entering the lung instead of the stomach cuasing infection) The SALT should e regularly assesing her swollow reflex and be giveing you advice and techniques to help her swallow properly.

Baby vics is fine for babys over 6 months, its just menthol. If you dont want to put i on her skin put it on her baby grow at night.

Dexamethasone is a steroid which can be prescribed in very small doses to reduce inflammation in particularly the chest. Although given your dd condition it may not be an option

Potty1 · 11/02/2006 11:02

kk- dd isn't allowed cough meds for the reason chapsmum states - they tend to up her already fast heartbeat. Do you prop up her cot to help reduce her sickness? It can help with the breathing too.

You go to Alder Hey don't you for her cardiac? Do they have a specialist di-george clinic there? Hope you manage to fend off any serious infection. Winter is the pits for them isn't it?

Original poster
kreamkrackers · 11/02/2006 11:09

baby vicks is suitable from 3 months it says, i've put it onto her vest. the gp knows about digeorge syndrome, i personally gave him a booklet which says she should be on perminent antibiotics until we know how her immune system is functioning and he laughed it off and said the booklet was written by parents not doctors (here ). she used to asperate her liquids (shown up on an xray investigation) but they now go down the right way although she doesn't like to swallow liquids still.

OP posts:
Original poster
kreamkrackers · 11/02/2006 11:14

no specialist digeorge centre there. she has a wedge under her matress anyways because she's on the pump at night. winter is the worst time for them. how much would a humidifier cost? and where do you get them from?

OP posts:
chapsmum · 11/02/2006 11:51

you can get them in boots, not sure how much,
I use my sterilisor... if you've got a steam sterilisor you can fill it up with water and leave it on, well away from her cot. Beware though,. it may strip your wallpaper.
Will she take her fluid beter if the have been thikened slightly?

chapsmum · 11/02/2006 12:05

Really makes me so angry when GP will not listen to you
Best dr I ever met said he would never dissagree with a mothers instinct as that was something he could not learn from a book.
I second the sugestion to get you consultant to write a strongly worded letter advising treatment.
And I do hope you keep out of hosp, they really are the worst places to be when you are sick!

Original poster
kreamkrackers · 11/02/2006 12:06

she used to have thickened fluids but the speech therapist told me to stop these as she is so easily sick and to just run everything through the pump. i want to try her with this again though as i feel it's cruel not to offer her a drink when she can take it. she will have sips of water but she does tend to spit most of it out but at least she wets her mouth a little. the weird thing is she loves having her teeth brushed! we have collgates bubblegum flavour and i don't know whther it's the flavour of the toothpaste or because i praise her so much for letting me brush her teeth but she really does love it but again she spits out which is alright for whilst she has her teeth brushed.

OP posts:
chapsmum · 11/02/2006 12:12

Its a strange suggestion, you would think that thickened fluid would gravitate naturally to the bottom of the stomach... babys with reflux are given thickend milk etc.
If you do not think the thickened fluid are causing the sickness it doesnt really make any sence to me to stop them.
In an ideal world she would be weaned gradually down the levels of thickness until she is able to accept normal fluids.
Am not anSALT though.
Sorry if i'm saying things you are already aware of, I'm just thinking out loud, just say if u want me to keep my thoughts to my self, sorry...

chapsmum · 11/02/2006 12:16

ve had another thought, thinking of reflux... does your dd get gaviscon...If she is repeatedlyy sick she will be making her throat more sensitive by continual exposure to acid. perhaps an antacxid prescribed by your (useless) gp would help?

Original poster
kreamkrackers · 11/02/2006 15:41

she's on ranitodone (an antacid) and domperidone (digests food quicker) for the reflux. hopefully the new salt worker will be better. the paediatric nurse who used to visit us suggested she had thickened fluids going through her pump to help with the reflux but the hospital said they try to avoid this route if possible. i don't understand why that was as our nurse was thinking with the reflux it could be going into her lungs even when she's not being sick. i know from the recent xray investigation that this is no longer a problem but at the time that this was suggested the xray investigation hadn't been performed.

OP posts:
dear · 11/02/2006 19:54

am having adouble smear test at hospital am scared.
Ihave a double cervix so have to smears.
and all so anixery.
I 47 year age.
I keep putting my appointment off.
I do not know what do.

BEST WISHES
LYNNE EDWARDS

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dear · 11/02/2006 20:03

I am having a double smear test at hospital am scared.
I have a double cervix so I have TOO HAVE two smears .
and I AM so anixery.
I 47 year age.
I keep putting my appointment off.
I do not know what do.
So some one out their can help me, I would be grateful.

Best Wishes LYNNE edwards
FROM BRADFORD7.

BEST WISHES
LYNNE EDWARDS

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Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

Original poster
kreamkrackers · 11/02/2006 21:38

i'll try to get a new thread sorted for you so that you can get advice from others in your position. i would go if i was you, my mum kept putting it off and is now running into problems and is getting investigated but she doesn't have a double cervix.

OP posts:
starlover · 12/02/2006 22:35

sorry... this is weird... that's copied and pasted from an e-mail!

waterfalls · 12/02/2006 22:44

Thats what I thought, she is here too

nutcracker · 12/02/2006 22:45

It is weird and sorry but a bit rude I feel to be posting all over other peoples threads like that.

waterfalls · 12/02/2006 22:46

Maybe she found this site by chance and does'nt understand how it works..............still weird though.