Great Ormond Street - how to cope?

[NASWM]

DS2 (20 months) is going in to Great Ormond Street next week for a few days. Tiger Ward. Think I'll be on my own with him a lot of the time as DH and DM will be taking care of DS1. How do you cope? What do you do about eating, showering, going to the loo. I really dont like the idea of leaving him 'alone' especially after surgery.

He's been in my local hospital for various things but I am so familiar with it which makes it easier.

NASWM - I think that is a really tough age for them to be in hospital. Little babies you can leave for a bit to go to the loo and stuff and oldies understand that you have to nip away for a short while but toddlers are difficult.

Take some snack items with you - cartons of juice, cereal bars and that sort of thing. And take advantage of any naps to go to the loo, have a drink and eat properly if there's time. Also try and get friendly with other parents there - it helps to take the pressure off a bit.

What's he having done?

Thanks (how do you abbreviate your name?!!). He has a congenital hand deformity. Not life threateneing but needs to be done or it will start to cause problems.

I'm usually Potty1 - this one might get shortened to Saggy which is probably a good description at the moment lol

Hope your ds's op goes to plan.

Thanks Saggy. So have you got experience of GOSH or just hospital in general?

Not GOSH, Birmingham Children's and local with dd mainly. She has congenital heart disease and ortho issues. She's 12 now though so it's much easier when we're in.

There's a 'patient's hotel' at GOSH, especially for parent's of the children. I'll see if I can find any info about it - but def. worth enquiring about it.

I can give you info on places to eat there..

Here's a web address - sorry, can't do links with this keyboard.

www.gosh.org/redevelopment/news/news_041011_westonhouse.htm

I have a friend whose wife is a nurse at GOSH - I'll ask him about the facilities for parents.
In your local hospital are you happy to leave him for 10-15 mins whilst you get something to eat etc?
There are a number of places to eat inside GOSH - a costa coffee bar, and a big hospital canteen...but I don't know if they can deliver food to the bedside for parents.

Hi NASWM - my daughter was in GOSH a couple of weeks ago, for about a fortnight. Ours was an emergency thing, so didn't get time to worry about going in, but the staff are great as are the facilities. We weren't on Tiger but I imagine that things will be similar with the ward we were on. My daughter is 15 months so I was put in a room with a flip down bed (for me!) and a small tip, the curtain didn't reach all the way across the window, so take in some of those airline eyethings if you're a light sleeper. There were tea/coffee facilities, as well as bread/butter/jam for toast, and a microwave, for your own food. Also, a playroom, and a play specialist - bring in toys from home but you can always restock from their stash. Will think if I can come up with some more tips - but lots will depend on whether you have your own room or are in the Patient's Hotel. Good luck with it all.

ps Saggers is absolutely right - take in your own food, whizz to the loo when little one's asleep or taken up with the TV (my daughter is now a total telly addict and knows all there is to know about CBeebies!) (also, remember a dressing gown and slippers/socks for midnight trips to the loo) and grab food/meals where and when you can. If I had no-one around to 'sit' , the nurses, unless really busy, were happy to let me nip down and bring back some takeaway food (there's a Costa and a canteen, just ask for opening times). Again, hope this helps!

Hello NASWM
My son was on Tiger ward for major surgery on his skull about four years ago, he was 6 months old. I am sure you will find, as I did, that everyone is so helpful and supportive. I was actually encouraged to go out and have breaks as the nurses realise that you do need a change of scene yourself. The other parents (some of whom will no doubt have been going there for years) will really help you and 'show you the ropes'. Good luck - it is a wonderfully supportive environment.

Thanks everyone for your useful comments.

Bluebear - I shall be staying on the ward but thanks for the info about the hotel. I dont know if it will in one of the single rooms (I hope so) or in the ward area. They will decide on the day.

bloomsbury - I hope your DD is okay now? That must have been a big shock. (My other DS had emergency surgery when he was smaller and it is a worry isn't it. the reality only hit me afterwards though). thanks for the sleep tips. I am a lightsleeper!

Lindy - It's good to get first hand tips. There were a few children with head braces on yesterday (our day visit) so I imaginie that is similar to what your DS had done. My DSs op is not life threatening at all, but does need correcting. The possible complications are due to to separating the nerves in his fingers which could result in somoe loss of movemnet. We only expect to be there for a few days.

Thanks again everyone, and any more things you remember plpease let me know. I dont want to get there on my own and discover I've forgotten something vitally important!! I'm trying to bury my nerves in getting organised...

good luck naswm. my nephew has spent lots of his life in gosh - so from my experience - drink LOADs of water, it's very very hot there and you can get very dehydrated when you are tired. take uplifting oils and creams and chewing gum with you that you can just zap on quickly to freshen up in case you want to hang around for ward rounds etc - take CHOCOLATE for energy and positivity - take LOADS of puzzles and books and little toys for your child - ration them so they get to play with different things every day - and yes get friendly with nurses and other families so you can do swaps for loo and shower etc. There is a big new costa there if you can get to it. Very best of luck.

Thanks siddoms some good advice there.

DS2 has temperataure of 38.6 and a nasty cough (caught from DS1 who had it all last week). :( I SO want this op to go ahead tomorrow, we have been working towards it for so long.. Going to do all I can today to get him fit enough to make the trip tomorrow. then it's up to the docs to decide if he is well enough to do it. Very frustrated about it all.

i used to work in gosh (not tiger ward) and the advice everyone has given has been spot on, the ward i worked on also encouraged parents to take a break and go off the ward, but this may not be possible if the ward is busy/short staffed, take lots of videos for him, lots of snacks and drinks to have in his room/beside his bed, as you might not want to leave him to go to the kitchen, and the only other thing i can think of that nobodys mentioned, is to take a pillow, when i worked there, they were in very short supply, think there was a pillow fairy!! i hope your ds is well enough for his op tomorrow, let us know how he gets on.

Good luck NASWM and your DS2.

DD was in a local hospital recently. Complications with her surgery meant a longer stay than originally intended. - 5 nights instead of 1 or 2 and I stayed with her. I ususally woke before she did and went for a shower, waited until my DH or mum arrived or until she nodded off. She was on Nil by Mouth for 4 days so all eating and drinking was done out of her sight too.

I'm horrified by suggestions here though that you might not be able to leave the ward/your chi;d's side because of staffing levels. Parents aren't supposed to be substitute nurses except in some special short-stay wards where parents are required to stay as opposed to being offered the chance to stay.

Good luck tomorrow NASWM. Hope it goes well and you are soon home.

Very good advice about the pillow. Definitely pillow fairies at all the hospitals I've stayed in!

hello matthew my son who is also 20 months, has been in GOSH 3 times and i have stayed with him on all occasions, we live in essex so hubby and my DD stays at home with her

matthew has spent 5 days in august/sept there and he got his own room, i got a bed to sleep on, they have a kitchen, where u can use the microwave, and have a fridge etc, had to share the patients bathroom though

i know on some of the main ward, like badger ward is a high dependcy unit, and mathew was on that bit for 2 days and i didnt have a bed, as they kids on ventialtors and they threw me a bit, they coukd of given me a room but had to share and to be honest i didnt wnat to leave him, so i put 2 chairs toegther and slept there

they r a brillant hospital who will care for ur child so well, we was in again just after xmas and again he got his own room, and i gota bed, some ward like ITU, PICU, dont have bed for parents, but they will provide accomadtion for u, i know alot of mums just end up sleeping on a chair like me

food wise, u will be sick of fast food trsut me when u leave, lol
they have a subway up the road, and have about 4 all in walking distance of the hosp, they have a lovley park but bit cold for now lol

they have a mcdonolds, pizza hut and burger king, all within 5-15 min walk, i found a sainsburys where i got some things, its only small but has just about everything u need

they have a chicken shop, superdrugs, boots etc which does help even if u have a half hour break

the canteen food in the hosp isnt very nice to be honest, ate there once, they have a coffee shop in the hosp, and have a laundrette if u wanna do wahsing, but i never found it

good luck and hope it goes well

love natalie

This is going to sound mind-bogglingly trivial, but from the POV of looking after yourself, when ds was in hospital (not GOSH though) I really wished I had a little handbag mirror. We only had the patients' toilet with a little handbasin, and it would have been easier to be able to put on a bit of make-up while I was by his bed. As it was I just didn't bother, but it's such a little thing to bring, it might be worth considering. Definitely recommend lots of bottles of water, too. Good luck with it all.

I agree re pillow too. Or at least his own pillow case so you can put a nice cover on. We also took DD's dolphin throw too and put it over the bed to make her own little piece of home.