Planning a mini break - what to do about DD's night carers?

[Tootsandblanket]

This cold weather has spurred me into planning our first mini break with DD in ..sunny England ! Haha! As we have never taken her away before this is a massive step for all of us. The logistics are potentially the problem. Minitoots has 7 nights a week waking care provided by our PCT by lovely nurses who know us all very well by now. Therefore in planning our break I think we need to stay within commutable distance for them. Has anyone done this before? Or organised to take a nurse/ carer away with them? What arrangements did you make about payment/ room provision ?
I am looking to hire a house/ cottage just outside of Brighton, so we can take DD to the beach, without being more than 1 hours drive for the safety of our own home.
I think I am all looking for a bit of reassurance here as well that I am not crazy in taking a medically fragile baby away from the safety net of her local hospital who know her well. But on the other hand she's never been to the seaside! I'm not sure if she will like it, oh dear, but I think DP and I need to have time out of our house as well.
Thanks .

No experience of this situation as we do not have carers in overnight for DD.

How are your nurses employed? Do they work for the PCT directly, are they provided by an agency and paid for by PCT or do you employ them directly using Direct Payments? If they don't work directly for you, then you will need to talk about the logistics of this with the team/organisation that they work for first.

It sounds like it will take a lot of planning. Is it not possible to take your DD for a day out at the seaside instead and then maybe you and your DH book a night in a hotel closer to home to give you a break whilst the nurses look after your DD in your own house?

Hi Bigblue thanks for the response. The nurses are provided via and agency funded by our PCT. we have provisionally and conversations with a few of them about a few nights away and they are willing to do it.
We had thought about the day out it with DD it's best to have a base close by, to retreat to for naps etc. car journeys are hard work with her, and we are unwilling to push it over an hour, as she would probably go nuts!

I have found a few places directly opposite the beach - it generally takes a few attempts for us to get anywhere successfully, due to meltdowns, leaking gastrostomy sites, hay fever , so if we were set up near the beach we could take the pressure off and not push too hard.
In my mind i thought it would be-
Day 1 - journey to cottage and settle in. Maybe a stroll, maybe beach.
Day 2- go to beach - hopefully morning and afternoon around nap time.
Day 3- beach again and then home.
So we have lots of time to make it to the beach because something is bound to happen!
Also in response bigblue we never leave DD at night. We are lucky enough to have 7 nights care at home so we don't have to leave her. I would not be happy for both of us to be away at the same time.
I will speak to the nursing agency and see how they feel about this.
I will also speak to DP as rentals in the UK are expensive! Wow.

Not necessarily much use for the overnights, but am wondering might a motor home work for days out?

When DS was alive we did not take up overnight care (contol freak moi!!) but we did take him to Disneyland (Paris) and went with very supportive friends
DS was on TPN and I was terrified but he enjoyed it so much I am so glad we did it. I have such wonderful memories it was worth the risk. Our children deserve a bit of "normal life."
Go for it girl!!

The motor home idea sounds like fun. Maybe I will keep that for next year, thanks mareeya.

The Disneyland trip sounds wonderful 2old.TPN is hard core to manage, I am in awe! I'm sorry to hear DS has passed on, thanks for sharing your memories.
I veer between wanting DD to do and have normal experiences to want to keep her safe at home with me. It's hard and I dont think we have for a balance yet. I am hoping now we are coming into spring we can start venturing out of the house more and I am planning on taking her to mix with some children at a portage drop in session.
I am continuing to hunt for the perfect apartment/ cottage and am speaking to our nursing agency supervisor today.

All plans are currently on hold- having spoken to our nursing agency who directed me to out CC team at the PCT. the decision to allow us to take the carers away from home, even to a commutable distance has to be made by panel. The next meeting is in 10 days so we need to wait. It's very frustrating to feel so little control over my families life! Fingers crossed.

Would suggest writing a letter to panel, (violins optional) to make them all feel really bad if they refuse without exceptionally good reason.

Explain why you think it's important she does this, eg (this is off-the-cuff so may not be accurate) 'because she's not been well enough to try before, and no-one will tell us what next summer might bring'

Point out she has few opportunities to do toddler stuff and needs to experience some normal life, with nice memories.

An update - we are allowed to take our night nurses and have booked a gorgeous cottage with ducks, chicks and large petting rabbits on site, also only a 10 min drive for the sea side. We are so excited ! Hooray!

I just wanted to let all you wise posters know that we went on our mini break, had a wonderful time and DD was brilliant the whole time we were away. We went to the beach, to a bluebell carpeted woodland, petted rabbits and thoroughly enjoyed ourselves. I loved it! We are planning our return later this year. Thanks for all your advice.

So glad it all worked out well toots . I hope you post today means that you went away last weekend and actually had some good weather instead of this cold ,damp ,wintery weather we have had today.

Ah, brilliant

Brilliant, sounds perfect, glad you ahd a great time.