2 week hospital stay with 3 year old. What to pack (GOSH - heart surgery)

[ColdCottage]

My DS has routine open heart surgery next month at Great Ormond Street Hospital. (Partial AVSD).

I've not stayed in hospital for two weeks before let alone with a recovering 3 year old. So I wondered what I should pack for us both.

I've read it's really hot in GOSH on Bear Ward so I have light clothes and flip flops on the list but would love some extra tips for me and for my DS (I have a Mollys Dolly with a scar to help him know what to expect and I have also ordered some Pyjama Fairies pjs and gown).

Also if anyone had any tips on how to prepare my 3 year old for the op and recovery (in hospital and at home) I'd be very grateful.

Thank you.

Lots of books and hospital role play before hand for him. Always be positive about it and don't show your fears to him.

Pack stuff so it's easily accessible or labeled. Lots of pjs for you and him. Flip flops as you say are a must (I always end up with a fungal toe infection after a hospital stay!). Compact towels that are your own are nice rather than just using hospital ones. Likewise his or your own pillow?
Eye mask and ear plugs essential
DVD player/iPad/entertainment for you and him
Lots of nice snacks and drinks. I'm not sure about gosh but other children's hospitals don't give parents dinners but have microwaves in parents lounges so you can microwave meals for you (and him if he doesn't like hospital food).
Get him to choose a teddy or comforter to take
Phone charger!
Dressing gown or cardy for walking about the ward in your pjs
Don't take jewelry or valuables for obvious reasons

Hope it goes well. The staff at these places are amazing and he's totally in the right place.

Also might sound odd but take pictures - it's part of his childhood and your family story

Thank you Star.

I've not experienced it myself but I'm a paeds nurse so have seen a lot of families! I'd say:
Extra long phone charger
Big reusable water bottles
Travel mug if you drink hot drinks
Your own pillows
Any way of predownloading films or favourite shows onto a tablet?
Big bag of change for vending machines/cafe!
A big bag to keep your dirty clothes separate from clean, and some wards have washing machines but no washing powder so maybe check that!
Some families I've seen when they're staying for that long take those put up plastic drawers in to keep everything organised as bed spaces have such little space and living out of a bag is a nightmare
Hopefully someone else will come along with more ideas

Have any of the play specialists spoken to your Ds at all? The ones I've met have been absolutely fantastic at helping prepare children for what will happen such as them falling asleep, having cannulas etc. If they haven't then definitely ring the ward and ask if they'll be doing it when you're admitted or if not, if there's any way of doing so beforehand it's so hard to know how much to tell a 3 year old but they're excellent at gauging their understanding and how to help them cope.

Hope everything with your DS goes well, you sound like an excellent strong mum!

Can't improve on the excellent advice above other than to recommend hand cream. The hand washing and anti-bac gels create v dry hands!

Oh and portable chargers for phones! Anker are brilliant and easily ordered on Amazon- sometimes with all the medical equipment plugged in there might only be one plug socket free and when you've got a dying phone battery but a child with something plugged in it would really help! I would say an extension cord too but wards probably don't appreciate that

Thank you. Those are so great ideas.

I will give the play specialists a call as we only go in the day before. Thanks for the tip

I recently spent 5 weeks in hospital with DD after having brain surgery, my life saver was my kindle and charger, used to read a lot when I couldn't sleep.

Thanks Henni, I will get my kindle loaded up.

Is there wifi that I can use to run my Netflix on the laptop in the hospitals?

I'm sure that would still be plenty of time where I've worked they would regularly prep on the morning of the op (albeit smaller ones than your DS bless him!), I think so that it's still fresh in their minds and they also don't have too much time to worry about it as a lot of children would definitely worth a call though to check, I've heard such excellent things about the GOSH play specialists though so I'm sure he's in good hands

http://www.gosh.nhs.uk/about-us/foundation-trust/membership/noticeboard/wi-fi-gosh

Coldcottage, we bought wifi when we were in hospital, as we stayed a while it worked out quite reasonably priced for us.

Thanks Henni and Furry.

Loads of good suggestions! Def second extra chargers and having stuff downloaded to watch (for both of you!) and i'd add a pair of earphones so you can watch something at night if you cant sleep. I'd pack a notebook and pens as wellto note any questions/ write down anything important youre worried you'll forget in all the stress. And although its most likely warm, bring layers incase its cooler than you think. Especially if youre tired and stressed you might end up cold in the night. A wee handheld fan might be good for keeping you both cool!

For your ds front opening pyjamas would make it easier for them to see his wound and change dressings. I'd maybe pack some small treats for him a well as rewards (things like sticker packs, a wee bag of sweets) so you can have a wee treat if he does something he doesnt want to like take his medicine.

In terms of preparing him, definately worth speaking to the play team. But from a diy point of view i'd say little at a time. He's too young for a bit serious sit down talk. But maybe read a story about a hospital then talk about how thats like what he'll be doing. Give him a chance to ask questions but dont be too surprised if he doesnt come up with much straight away. Maybe do a story one day then play later at making a teddy hospital so he can play through any questions/ worries?

And remember its a hard time for you too so take any offers of help that come from family or friends!

When my daughter was due to go in for surgery with a lengthy recovery period I did a lot of research on preparing her for it.

What I whittled that into was

Step 1, lots of role play about hospitals and Drs. Include things like packing a bag and going to the 'pretend hospital' (I explicitly said pretend hospital in our play until later)
Also include being examined, temp taken, having medicine, being put to sleep, bandages on, lift you shirt for the dr to see.
Start with you both being drs/nurses and a favourite toy being the patient. When you have demonstrated the roles start switching it up so that you are taking turns at different roles.

Step 2

The recommendation is a day for every year of their life, in your case 3, before they are due to go in start telling them that they will be going to the real hospital soon.
Ask which toys should we take when it's time? let's pack a bag for the real hospital, give them absolute control of what goes in.
Continue with the role play but start to drop in references to doing it for real, soon the real nurse will want to take you temperature etc.

The day before tell them that tomorrow they will be going to the real hospital and pack the bag again.

I found it helpful to talk about this as something WE were doing and was very clear that I would be staying with her. I realise this may not be an option for you.

I could go on at great length about this particular subject but that's an outline of the programme I went though. She dealt with the whole thing exceedingly well and it was clear that the preparation helped.
I am happy to go into more detail or answer questions if you want.

Wrt to what to take

For child the hospital will provide most things they need but by the end of 7 weeks the things we found most useful were

1. a thin fleece peppa pig blanket. It made her bed feel like a child's bed not a hospital bed
2. iPad/ DVD player and DVDs. She watched a lot of DVDs, she was groggy and sore for a while and needed to be as still as possible, the DVDs kept her mind occupied and her body still.
3. some kind of soothing lullaby music. Wards can be noisy, it helps sleep to create a sound barrier.
4. clothes that can open easily for examination. Later on when they are starting to feel better getting dressed can really help give them a boost.
5. a little battery fan

For you.

Nothing is guaranteed to be provided so cover your bases.

1. protein bars to stave off hunger, opportunities to eat can be erratic.
2. a completely sealed thermos cup. You get great ones from Morrisons for £4
3. iPad/kindle
4. headphones
5. thin cotton dressing gown and slippers
6. plenty of change
7. water bottle
8. wash things and towel.
9. pain killers and Imodium. Stress does things to you body and these will not be easily accessible.
10. nail clippers
11. baby wipes

Please be kind to yourself.
Accept offers of help, ask people to bring in your meals on rotation, send them away with your washing.

Don't be shy to say can you bring more batteries from the shop or will you sit with them so I can spend ten mins outside.

Truth be told this is harder on you than on them, so lean on people and be generous to your own needs too xxx

I was going to say portable battery charger. One for you, one for DS (or one on charge one being used). Ankers are fantastic but you can get ones from amazon for less than a tenner ive found do the job just as well.

A double USB port plug. Two very long cables (2 metres are good), two short. You can also get USB cables to charge Nintendo devices too.

Cup a soup and pasta in a mug for those occasions when you need food but only have access to boiling water or don't want to leave your child's side for long. Microwave food that will keep (in case you can get out and don't fancy it).

Shower gel or body scrub.

A couple of simple games that can be shared/used to make links with other inmates. I was going to suggest story cubes and pass the pigs have been popular when we've been in but they might be too old for yours. Something like snap, dominoes, matching pairs. There's been a few occasions when I've been playing with DS another child has shown an interest then they've taken over playing together and I've had a bit of a break.

One or two small non battery dependent, non noisy toys like a couple of cars or trains (do name them). Lightening Mcqueen and doc or a couple of transformers have been good for us. Something good for running backwards and forwards over the sheets when you are feeling rough but also can give a bit of imaginative play on the bed table when the tablet becomes boring. If there yours it's nice to have a little bit of home and you don't have to share them unless you want to.

On the canulas: before they start jabbing anywhere with needles make sure the spot is warm first. It is much easier and less painful to hit a warm throbbing vein thats near to the surface than a cold one. Soon as they put the Emlea cream on wrap arms up (and legs just in case they miss the hands) . And just in case anywhere still has them (they used to be the norm), cellular blankets are horrible because if the canulars get caught in them they hurt to buggery. Sometimes we take a home blanket and take off the cellular ones or wrap the top half in sheets.

A big "spot it" book like where's wally. It has to be big so it acts both as a distraction and as a screen to what's going on as the needle goes in. Bubbles in case that doesn't work (some departments do this anyway)

Def second pen and paper - you'll think of a question for the drs just after they have visited and you don't then see them until the next day!

Also many hospitals have counselling services and support for patents - use them - like someone else said take all the help you can get!

Parents not patents

Thank you. These are really helpful especially the way to prep him. We do have a medical kit and fancy dress so will start on that now.

I'd love as much detail as you can share with me so if you are happy to pm what you did that would be great. Thank you

Yy to story cubes. I didnt know they existed before we went in but they would have been great for us

Sorry I was writing and more tips came in.

Thanks for the cannula one Toffee

So the role play is so helpful in preparing them because you can tell them about what might happen and why.

You need to take the lead because they don't yet know what you are trying to communicate.

Start off with little things, 'the nurse wants to take your temperature can you hold this under your arm?' 'can you lift up your shirt so the dr can see xxx' praise, 'the dr thinks you need to have some medicine and stay at the pretend hospital for a few days, let's take the medicine and snuggle in the bed together'

Keep adding in details as the play progresss but slowly they need time to play out the scenarios.

Play out taking medicine and what it's for i.e. This medicine helps your body not to feel sore, this medicine helps your body to poo, this medicine helps your body to relax. Be honest but keep it simple.

I found she was happy to take medicine if I explained why she needed it and what it was doing.

Play out having magic cream and a sticker on, bandage over the top.
This magic cream helps your skin not to feel sore, we put the sticker on so it doesn't rub off. The bandage keeps your hand nice and safe.

What other things is he likely to face
Scans? Being hooked up to machines? The more you can find out about his recovery process the more thoroughly you can prepare. For planned admissions the before hand stuff is pretty irrelevant imo, at that point they are feeling relatively well (or at least normal for them) it's all an exciting adventure with new pjs, even the actual going under ga is such a small part of the experience that I wouldn't focus on it too much.
'The anaesthetist will give you a special medicine that puts you to sleep, while you're sleeping soundly the surgeon will help fix a part of your body that's not working quite right. Once they are all done you will wake up feeling a bit groggy and I will be waiting close by'
All of that can be played out but it's best done with toys so that they can see all the different roles.

As well as the medical stuff drop in things like, granny coming to visit, the day we had ice cream for breakfast, drawing pictures, getting new crayons, Make it clear that funny things happen at the hospital and that's fine, no big deal.

Don't underestimate their intelligence just because they are small and look like babies when they sleep doesn't mean they aren't taking it all in. Use the proper words for things and a wherever possible seek their consent for procedures.

Most importantly keep yourself calm. They take their cues from you, if you seem relaxed about this new and unusual thing it's probably fine.

If need be take a min away from them to lose your shit.

dont be afraid to ask questions. There is no reason to pretend you understood what they said if you didn't, keep getting them to explain until you understand. They are a normal human who learned this and you can too

Hi coldcottage I am going to GOSH tomorrow for heart surgery for my dd (11 weeks) and will be on bear ward for about a week so will try and remember to pop back later in the week to give my tips on what to bring. Feel free to pm me, it's very scary I know and being organised helps. I am also taking a craft project to make something nice for dd's room.

I have had a small bit of experience with staying at GOSH; one three week stay a couple of years ago and then a couple of 4 night stays each year since. Last one in March & We have another one coming up in June.
I say a small bit as for some families they are there months so someone with more experience may give more insight.

The play specialists are amazing, no experience of Bear ward, but most wards have a play visitor or visiting one. Is there a video tour of the ward? Often on the ward website.

Your little one will be well looked after.
A favourite toy & distraction toys are great, but lots in the playrooms etc...

You want to pack cool/light clothes for you. Flip flops, pj's, light day clothes. Ear plugs or headphones, long charger lead, a travel coffee or tea cup with lid to put a hot drink in.

You can take your own food in for you and use the adult kitchen. But there are good/nice cafes around you and you often can (depending on your child and there condition) can take them out with you to get a coffee/lunch etc.

There is a children's playground called coram fields which is a great place to go when/if well enough.

There is an Italian (will recall the name) which is opposite one of the side roads that does good take away for you.

There are often amazing events on for the children and activities they can go and visit.

This is a bit rambling, but dm if you want to do so.

A good coffee each day and reminding myself to get outside each day helps.

If you have family/friends when they visit take some time out for yourself to walk around the block.

Take some good books to enjoy tackling while there as a distraction for you.

Fingers crossed for you.