experience of medically unwell child at home?

[ohdearwhathappened]

Hello
I couldn't think how to phrase my subject sorry
Does anyone have experience of having a baby with 'immediate' medical needs at home who would care to share some wise words with me please?

I'm thinking along the lines of a tracheostomy that needs suctioning, home oxygen that needs monitoring, so something that needs monitoring and action if all is not well rather than autism or even fitting IYSWIM (not that they don't need monitoring)

I'm using a new name!

dd also as breathing problems and an alarm to tell us when she stopped and they talking about givin us oxygen at home too, she also as a pump and feeding tube! i have a friends baby whos on oxygen all the time.

Hi
So any advice?

We've just been discharged and at the moment I feel completely at sea!

Sibs were over an hour late for school this morning because it all went wrong at 8.20

We are falling between 2 NHS trusts and I rather suspect that we are going to end up seeing no one in the community if the organisation of the place where we were an in-patient is anything to go by, should we see anyone?

they muttered something about getting supplies from community nurse does GP do it if not?

at the moment I'm up 3 hourly at night and last night it took me 2 hours and 1 hr to sort it out what happens when I collapse from exhaustion?

Finally daft questions
how do you sort out school/nursery? is this the kind of thing we need a statement for?(jumping the gun a bit at 8 weeks I know ) but seeing the stuff on here it fills me with fear adding that to the mix

what do I do about work? (I kind of like my job and would like to go back -if I still have one but childcare......?

(dp not helping with whole thing I'm not sure he's so much as changed a nappy but that's for another thread)

Oh Riven, you've only misconnected the feed pump once? I still get a bed full of stinky milk soup sometimes!

OhDearWhatHappened, sounds like you need practical help at home: I second the advice to get Social Services on the ball - don't take no for an answer there, becasue they may try to fob you off. Your GP may be usefull in putting pressure on the relevant people - especially if you turn up and burst into tears! (again)
Ask for either home care workers or Direct Payments to get a home help of your own. That person can come in and sort washing, make breakfasts, wash up, get schoolbags ready etc, it does take a bit of getting used to, having someone else in your home, but we are on our third home help now over several years and it has always worked out well for us.

I some places the Community nurses can come and do this sort of thing. (sometimes called Diana nurses)

You may need to be quite persistent to get the help you need, but you DO need it so get on that phone!

Good Luck!

And as Riven says, its amazing what you can get used to!

quick quick I can help!! I have a child with a newish tracheostomy (in june); full time ventilator; multiple medical needs; oxygen at home; suctioning frequently; humidifier; lots and lots of things to tell you. I am going to read what everyone else says and give you some advice xx p s she is 11 and goes to mainstream school so it IS possible

oh and I work part time, and have another dd, and have seen lots and lots of unwell children one way and another.Not professionally, just in and out of hospital and so on. And have a dh who is away 4 nights a week.

just noticed the time, got to do things. will come back later.

yes get help. Ask whether yr pct has a complex care service. You should be able to get a nurse/ carer through that

I've run back to thank you all for all the repies I will study them carefully
I disappeared since we went back to hosp Fri lunchtime and are still there we will be for some time I think, they have finally agreed with us that dc is too unstable ATM
I have come out to do some work but will go back tonight and will only be around sporadically I think.

I'm sorry your dcs are so unwell (all of you)