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Original poster

DS is being admitted to hospital for 2 weeks tommorrow :(

76 replies

Charleesunnysunsun · 17/04/2007 19:25

It is our first time since he was diagnosed with Cystic Fibrosis. His Dr wasn't totally happy with his last chest x-ray so has phoned me up this afternoon out the blue to say DS will be expected at the childrens ward tomorrow to start a 2 week course of i.v atibiotics.

This has totally blown us away, we knew it would happen but it's hard now it actually is, especially since he seem's healthier that he has ever been but i guess the specialist knows best.

He is 2.7 and wil be confined to his side room for the 14 days.

Has anyone got any tips on making this whole thing easier on all of us?
I will also have our 6 month old DS with me all the time.

Also wanted to let everyone know especially the Nov 06' postnatal girls know i will be away for the 2 weeks so i wont be posting. xxx

OP posts:
saralou100 · 18/04/2007 22:36

aah peachy, i was just gnna say still not got it! excellent!

rosealbie · 18/04/2007 22:48

deuxcheekymonkeys I have emailed you.

staceym11 · 19/04/2007 08:13

fostermum, please let her kow we'r all thinking of her, im trying to arrange some childcare so i can visit her, but dd is jacks age and ds is harry's age, so dont know if i'll manage it.

fostermum · 19/04/2007 19:55

ok update!
hows this for the N.H.S jack was suppose to go to st richards hospital for two weeks then afterwards go to brompton for a couple of days for a lung biopsy. with me so far?
when they got to st richards they where told he was so well and that his lung had re inflatted so he would go to brompton today for two days then come back to st richards for the rest of the two weeks,arrangements where made, all set to go.
when they got to brompton they where told he has to stay up there for the whole two weeks at least,his lung isnt inflatted,after two weeks they will do biopsy then two weeks back at st richards,they have been given the chioce of either chris her partner staying there with them to support charlee, which means no wages no rent,no house to come back to, or he comes back and she is stuck there with two babys in a small room on her own scared and alone.
everything st richards told her seems to be not true!
any bright ideas out there?

staceym11 · 19/04/2007 20:49

oh fostermum, i cant believe they'v buggered her around like this..........so now its looking more like 4 weeks and charlee will be alone?

jesus, i dont live close enough to get there really.......trying to think, could chris not explain to work the situation and take leave or something........is there any way they can explain to whoever they pay the rent to and see if they can come to soem arrangement? i can see many other options, except getting as many mumsnetters in the area to visit as humanly possible!

Debbsyandson · 19/04/2007 22:18

oh no fostermum wish i could wave a magic wand and make all this go away for them.

Saggarmakersbottomknocker · 20/04/2007 08:46

Fostermum - sorry to hear she's been mucked about. Can't be any practical help I'm afraid but having spent long periods with dd in hossie away from home I can empathise with the struggles, particularly, sadly, the financial ones.

Has she applied for DLA for ds? It's worth it even though the forms are vile and whilst she's in the Brompton she can get help to do them from the CF nurse/social workers.

FoghornLeghorn · 20/04/2007 08:51

Where is St Richards ?

Is her DH employed or self employed ? If he is employed does he have any annual leave he can take ? if he is self employed then I completely understand as my DH is too and it's a complete nightmare in situations like this (DD2 was in hosp 2 weeks ago).

Racking my brain trying to think of something

fryalot · 20/04/2007 08:53

oh god, I wish I could help... please let her know that we are thinking of her

littlepicklesmum · 20/04/2007 11:03

Just read and now in tears, How horrid for the whole family,I understand what they are going through. Please pass on my love, surely DH would be able to get compassionate leave most companies pay for 4 - 6 months, also there are lots of teams, (depending on area live in) surestart, homestart, red cross, local churches,that may be able to help. The health visitor or hospital should know. There is a number you can call for DWP, you explain your circumstances and they will let you know if there is anything you may be entitled to. I've probably not told anything new but please know that people are thinking of you all.
Big hug and sloppy kiss from DS.

podglet · 20/04/2007 14:39

fostermum - I have just sent you an email for this - I would like to visit Charlee and the boys if I can?

fostermum · 20/04/2007 19:05

update 3rd attempt any way!
jack is haveing biopsy monday and will know what it grows by wednesday.
they may test harry as chichester hosp didnt do it properly.
chi hosp been only giveing him a fraction of the antibiotics he was suppose to have which is why it the infection kept coming back,charlee feeling a bit brighter love mum

Debbsyandson · 20/04/2007 22:09

Fostermum im nowhere near where she is bur would still like to visit charlee can you email me through saralou please?

fostermum · 21/04/2007 17:48

hi all no news today but ive had several emails asking for her address up there so here it is.
charlotte peters, jack shorter,
rose ward,
royal brompton and harefield hospital
Sydney Street
London SW3 6NP

podglet · 21/04/2007 20:10

Debbsy - I was going to visit too but Fostermum pointed out (I hadn't even thought) that we can't take our LO's with us because some of the children in the hospital will be contagious and our babies might have bugs on them too iyswim?

This means sadly I can't go coz DS is currently refusing a bottle and so is still fully breastfed.

I am going to send a package instead - thanks for the address Fostermum

xx

allieBongo · 21/04/2007 20:23

i really feel for you and your ds. we spent 4 days on a childrens ward recently and it was exhausting for us all. I hope your ds does ok and send thoughts and warm wishes your way

Debbsyandson · 21/04/2007 22:26

Podgelet oh no never thought of that welli cant really leave ds for that long as it will take me 3 hours to get there and probably 4 hrs to get back,ill send a package too ill email sara for the addy thanks hun

staceym11 · 22/04/2007 18:43

fostermum hope my package got to you ok (should have arrived sat) still sending all the positive vibes possible!

ShinyHappyPeopleHoldingHands · 22/04/2007 21:57

I have only just seen this!! Fostermum please send my love and hugs and many good vibes to Charlee and to all the family.

Shiny (fellow parent of lpwcf.. well not so little.. nearly 15! )

fostermum · 23/04/2007 18:45

hi all,jack went to have his biopsy today,all went well and hes now back on the ward,they say it looked clear thank god!hopeing to be back at chichester next week if the sample doesnt grow any infection on it,thanks for all your prayers and good wishes love mum

Debbsyandson · 23/04/2007 21:03

fostermum thakns for keeping us updated.

littlepicklesmum · 23/04/2007 21:23

Thanks for keeping us updated, still thinking of them all, off for major op myself tommorrow in London for a week, I hope wen back online things will be looking much better for the family and holiday target achieved. xx

staceym11 · 23/04/2007 22:46

thanks for the update fostermum, glad all looking good for poor jack! sending our love and best wishes to charlee, and all of you!

PeachyChocolateEClair · 25/04/2007 11:28

I would secomd about homestart,I used to work for thema nd Charlee would fit the profile perfectly.

Please send them all our love.

And Charlesssun's DH could go on the AAS site and look at his aprental entitlements, they ahev everything you need to know X

\link{http://www.cysticfibrosismedicine.com/htmldocs/CFText/social.htmtry this}

PeachyChocolateEClair · 25/04/2007 11:28

sorry ACAS, not AAS

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