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How do you do it? How do you spilt yourself so many ways?

(8 Posts)

I'm in need of some hand holding tonight.

I have 3 children (9, 7, 1)

DS1 has Cystic Fibrosis. We have been to his annual review today and it's not good news.

They've assessed him over the 5 years since he's been having these annual reviews, his lung function has gone from 115% to now just 70% sad they'd expect it to still be "normal" for his size/age.

I'm doing everything I should be, physio, medication etc etc bug it's not enough.

They're treating it aggressively with 2-3 monthly IV antibiotics, which I'd normally do at home but they've said they'll need to be inpatient stays instead, and if he doesn't pick up after having them at the local hospital we'll have to go stay 3 hrs away in the shared care hospital.

I'm just about keeping my head above water as if is with the stress from everyday life with cf and the effects it has on the family, I'm not sure how I'm going to hold it together.

DS2 is already struggling so much atm, and the baby has never been away from me. God only knows how I'll maintain any relationship with DP as well!

How do you cope? How do you slit yourself between the hospital and home and mum stuff and all the other bits you need to be/do on top of that?!

PolterGoose Mon 17-Mar-14 21:44:00

I've got no idea, what you describe is way beyond my experience, but I couldn't read and not offer (((hugs))) and brew and cake

Sounds very hard sad flowers

zzzzz Tue 18-Mar-14 00:23:32

Hi titsa my youngest has had extended stays in hospital. I have 4 other children. It's very hard. I think you have to accept that you can't work hard enough or do enough to make it like the disability isn't there. I know lots of people feel upset at the thought of the whole family being disabled by one members disability but for me this has truth to it.
I go with the child in hospital. Dh stays with the children at home. They come and visit us whenever possible. It's awful and traumatic but the ones at home know that if they were ill I would be with them and the one in hospital knows I willbe there. Afterwards we are damaged but not broken and we rebond and rebuild our family.

I hate it, but we survive.

autumnsmum Tue 18-Mar-14 09:00:12

I can't imagine how hard it is for you but welcome

ohtowinthelottery Tue 18-Mar-14 09:10:47

titsa there is no easy answer I'm afraid. My DC1 (DD)was born with multiple disabilities and health problems but had spent very little time in hospital until........2 weeks before DC2 (DS) was born, when it all kicked off and we were in and out of hospital every 10 days for 4 months and then probably every 6 months after that. Poor baby DS was abandoned to friends/relatives from very early on as I needed to be at the hospital. It has been that way for 17 years - some years worse than others - and I have no family nearby. He has survived!
All you can do is make the best of the situation each time it arises. Be there for your DS1 but swap around with your DP so that you each get to spend time with all your children. At 9 and with a life long condition your DS is going to have to get used to being in hospital and will need to get used to not having you there constantly. We used to leave DD for an hour or so and go out as a family and grab a pizza or something to treat DS so that he actually associated his sister being in hospital with a treat for him - and you get to spend a little time together as a couple away from the hospital environment.
You certainly get to appreciate the little things in life that others take for granted when you have multiple and prolonged hospital stays things about how she craved for fruit/veg to eat and having smooth shaved legs.
Are you in touch with other families of children with CF? They will all have been through it and will be your greatest support. When DD was little, there was a lady who was often in hospital with her identical twin sons who both had CF. I don't know how she managed to get through the daily routine of all the therapy - but she did.

Swanhildapirouetting Tue 18-Mar-14 11:16:18

my SIL and her husband took it in turns to be the hospital person on duty. This was in early days of inpatient care with CF. The only positive is I think it challenged their roles a lot, and the Dad learnt a lot about managing his (older, but toddler)other child on his own, when previously my SIL had been the SAHM who had been the expert in childcare. I think they both found it very frustrating to be divided in two, but there were periods when they could just "be" in the hospital, and so the stay in hospital was not itself too traumatic, just the parting. They certainly used to spend a bit of time wandering in and out of the hospital, rather than always sitting by their child's bed. My SIL said her baby loved being in the hospital because everyone was so nice to him!

mintyneb Thu 20-Mar-14 23:09:31

I can't help with regards to splitting your time between siblings and locations as thanks to cf we only have the one child. But, I do know what its like to deal with annual reviews and all the fall out that comes with them.

My DD (who turns 7 next week) had her review a couple of weeks back. We are lucky that her lungs are ok for now but her LF is not what it was, she has yet another case of DIOS and has just started on a whole different load of treatment.

It sucks, I hate it and am feeling permanently cross. Luckily we have a fab home-care nurse so I'm going to arrange for her to come round for a chat.

Do you have anything similar where you are? I know they won't be able to help with the practicalities but would be someone you could let it all out to?

Thinking of you, stay strong x

Thank you everyone.

I am feeling a bit better now the originally frustration and shock has worn off.

Every year I send the weeks leading up to annual review worrying and panicking, the journey is a long complex one, not to mention expensive! Usually though, it's fine. Long, boring but generally fine.

This time the DR seemed to really care, she was lovely but authoritative and to the point, that isn't usually the case.

We have a fantastic although over stretched team down here, the community nurses are excellent and are always willing to listen to me wail. I think the expect a phone call post annual review for me to rant.

DS was meant to to in for urgent ivs on Wednesday but there was no beds so it's been postponed until Monday.

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