If your young DC is in hospital a lot...

[INeedNewShoes]

do you fancy having a support thread?

We are on our 6th admission in three months. With each one I've thought/hoped it would be our last but I'm starting to think this phase might last a while longer.

I find being in hospital with DD really hard but equally feel unimpressed with myself for having any focus on how tough this is for me when DD is obviously the priority.

The basics of looking after yourself as a parent aren't straightforward in hospital, things like getting hold of decent food and finding time to eat it, showering, access to clean clothes etc.

I also find that I feel acute empathy for any child on the ward in distress and for every parent I meet who is in their own tough situation. I whirr things around in my head in the night when I've been woken by one of the other kids crying.

I wonder if we might share some tips that might help each other.

[ForestBather]

I've done it for years and you honestly get used to it. That doesn't mean you don't care, you just can't 'go there' too much because you don't have the room emotionally when you hit a certain level of exhaustion. Not sure if that makes sense. You get so busy coping. Take snacks in your bag, see if you can put quality microwave meals in the fridge, carry a bottle of water, have spare clothes and other things you might need in the back of the car where they can't be seen. I'm sorry you're going through this and hope it is over for you soon.

[RainSodOff]

Hi its horrible so feel you. We jump between our local paeds and up to the 'big city'hospital which I like less as end up on a ward not our own room. I now have a 'go bag' each packed with all our stuff including spare charger, toothbrush toiletries etc as when getting admitted in a rush I can just concentrate on getting there rather than getting stuff together.

[RainSodOff]

This also includes stuff like paracetamol because never been able to buy any in hospital shop!

[INeedNewShoes]

Thanks for replying @ForestBather and @RainSodOff

I went much better prepared this time which did help but I still need to refine some of the tactics. I've started putting a little suitcase in the car with 3 days worth of clothes, pyjamas, wash bag, entertainment etc. as well as a coolbag with food for me in the car. Then once DD is settled in a bedspace I nip back to the car to get it.

This time we were supposed to have direct access back onto a ward but it was full and we had to go through A&E. Gladly I'd taken a lunch picnic in the rucksack for both of us but it took us 11 hours to get through A&E and be admitted so we were trapped without useful stuff including food for dinner. There's no way I can leave DD in that A&E to run to the car as it's too gritty and too understaffed. I managed to get a sandwich for DD from a nurse. I had my dinner at midnight once we were finally on the ward and I'd got DD settled.

We are always on shared bays and it's luck of the draw as to how tolerable that is. It was bad this time.

We were told at 3pm yesterday we were being discharged and I stupidly thought 'great, we'll be home for dinner'. It took until after 8pm for the new meds to arrive and then we have over an hour's journey home.

I feel like every admission chips away at mine and DD's mental health.

[turkeyboots]

It's so hard being sat on the children's ward. You've given me flash backs to DS s early years when he was on and out of hospital a lot.

You need ear plugs or headphones to drown out the noise of a shared ward. It's feels bad, but I can't cope with feeling obliged to look after other people's kids while sat beside my own very sick child. There aren't enough nurses and they are very busy, so you're expected to do the feeding, chase medication, change beds etc etc. At one point I shared a bay with a very young teenage mother who wasn't coping well, an unaccompanied baby and another middle-aged woman. She and I minded the teenager, got help for the baby as well as looking after our own kids 24 hours a day. It felt right at the time, but was so hard to recover from. And this was 10 years ago when there was more NHS staff.

Have your go bag, with snacks and drinks and chargers. Pack ear plugs and a book. A Switch or handheld games device is a godsend with older kids. And the best thing is to be able to swap out with someone overnight. DH made sure I never spent more than 2 overnights in hospital which really helped.

I'm not in the UK anymore and insurance means we have a private room, and there are way more nurses, so it's not so hard now.

[INeedNewShoes]

There's no father on the scene here and we're far from family (who for their own health reasons can't help us) so it's a case of asking friends for support. I've got brilliant friends who will step up when needed but I'm trying to limit how much I ask of people in case things get worse meaning I HAVE A to rely on them.

[turkeyboots]

Ah, that makes things harder. I've dropped a go bag and food to friends in hospital with their kids, but an overnight is a different kettle of fish. The big children's hospitals have more support, with Ronald McDonald houses and play therapist etc, they can give you a hours break and a shower away from the ward. But ad hoc stays on the local peads ward are less supported I found.
I hope your DC gets better soon, and you can avoid any more hospital stays.

[elliejjtiny]

Can I join please? My 10 year old has had 22 hospital admissions, mostly when he was 5 and under but he is currently on the waiting list for 2 different operations. And I have inlaws who keep going on about how stressful it is for THEM (I only asked them to look after my 9 year old for an hour and get him to school so hardly taxing. We even said no worries if not possible, it would just be easier if we didn't have him with us.

Anyway, my tips are to bring lots of stuff for your entertainment because it can be really boring (although a lot of people are horrified that I get bored, apparently I should be content with watching ds sleep and they would be too worried about their child to read a book).

Take photos. DS always asks what he looked like "when I was poorly" and "when I was asleep" so it's nice to be able to show him. I didn't take photos of my older child covered in wires because I was worried the nurses would think I was weird. Then a few days after he got better he was asking questions about what happened while he was unconscious and I wished I'd taken photos.

pyjama fairies do hospital gowns/pyjamas for children in lovely bright colours

Really smelly lip balm smeared on the top of the anaesthetic mask makes the gas smell less awful.

Bring your own paracetamol/ibuprofen if your dc doesn't like the cheap, own brand stuff that most hospitals use

hospital bracelets for your child's teddy can be bought on amazon.

My 10 year old has a name badge on a lanyard with his photo in that I made him years ago. He loves it and it makes him feel like he is staff and has control of his treatment.

Keep a suitcase packed with more clothes, books etc at home just in case you have to stay longer. Then you can say to someone to bring the suitcase. I learned that trick after asking dh to bring me stuff and he brought me a pyjama top instead of a normal top, trousers too small that I was hoping to fit into one day etc!

Bring your own pillow. Pillows are always getting nicked in hospital, although goodness knows who would want a plastic rustly hospital pillow!

I'll try and think of some more later.

[INeedNewShoes]

@elliejjtiny

It's funny about the boredom in hospital. I do think it affects the parents more. There seems to be endless waiting whenever DD is in hospital. Waiting for the specialist doctor on their morning rounds, waiting to be whisked off for a scan at a moment's notice etc. This means we're stuck on the ward. It's not too bad for DD as, when she's well enough, she enjoys the playroom. I find waiting very difficult and will perch on the edge of the chair for hours not daring to go and get a cup of tea, daftly convinced that the thing we are waiting for will happen imminently. I'm trying to train myself to get food/drinks and to read a book in these situations if DD is happily occupied, or I've even started taking my laptop so I can work.

I hadn't really thought about photos. I have taken some as we were in at Christmas so I took photos of DD opening her stocking etc. but otherwise haven't thought to.

[RainSodOff]

@elliejjtiny thanks for the hint re pyjama fairies, need to go look for ones that would be compatible with catheter for my baby!

[elliejjtiny]

@RainSodOff if you ask them and give enough notice they will make bespoke things for you to accommodate catheters and other things. My 10 year old will wear a pull up at night and for operations so they make his pyjama bottoms a bit more roomy to accommodate that.

@INeedNewShoes oh yes the boredom is really hard. Especially once they are a bit older and you're not chasing them down the ward as they try to escape. When my 10 year old was a toddler he discovered that the blood pressure thing on wheels made a very good thing to hold onto and push along while learning to walk. When he was about 4 he asked me what his teddy did while he was in theatre so that time I took a few of the teddy going to costa, reading a book, watching holby city on my tablet etc.

[Decafflatteplease]

Can I join? We are mainly day trips to hospital but also some overnights. Even something as simple as a blood test is a full day for us involving sedation 😞

We tend to get our own room if overnight or day surgery due to DC needs. And we are allowed both parents but if it's an overnight only one of us will stay.

I also keep a go bag in the car with spare clothes, glasses etc.

Food wise we are "lucky" that our hospital has excellent food facilities.

[HanHoggy]

My daughter is in and out of hospital a lot. Mostly planned but sometimes as emergency cases. Like others we carry an emergency bag but also an emergency changing bag in case of any accidents. My daughter has UC. Its deffo a stain on both parents, sick child and other children x