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.

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.

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.

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

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.

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.

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.

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.

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.

@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.

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

@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.

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.

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

Hi @INeedNewShoes, how is you DD doing at the moment? Stumbled across this thread as in hospital with DS at the moment, 6th admission and he’s only 7 months old. Hopefully you’ve managed to avoid too much hospital time over spring/summer months.

Hi @Yawnandstretch hope you are managing to get sleep, food, showers etc. It's especially tough when they are little.

Thank you @elliejjtiny I managed my first shower in over a week today so that was fantastic. I am managing with snacks, don’t feel hugely hungry but I know eating is important. Sleep is another matter - not sure I remember what that is!

Really appreciate your message ☺️

@Yawnandstretch As it turned out, DD recovered after our hospital stay in March and we have had a good stint of not needing to be admitted. We’re now dealing with a new condition, yet to be diagnosed but not urgent so we’re having lots of outpatient appointments and hopefully won’t have to stay in.

I hope things look better for your DS soon. That is such a lot to cope with. Sending tons of sympathy in your direction.

I’ve spent a bit of time thinking about how to preserve parental sanity in hospital. I’ve come to the conclusion that I need to get better at asking people to visit, to give me a break so that I can go off and get fresh air, eat a meal sitting at a proper table and generally recharge my batteries. It’s also good for DD to spend time with someone that isn’t me. She’s had separation anxiety since coming out of hospital as she just got so used to me being right there all the time.

Do you have people coming in to the hospital to visit you? And are you able to leave the ward with your DS so that you can get out for a bit of fresh air with him?

I was chatting to a parent yesterday who has had multiple admissions with her DD over a number of years. We talked about the things we find difficult being in hospital and it’s all the same things: eating, sleeping, waiting, the noise on shared bays, lack of natural light if you’re not lucky enough to be by the window etc. It is genuinely really tough being in that environment and that’s before we even talk about the dreadful worry as a parent of an unwell child! Back in March when I was struggling with the admissions I was berating myself for finding it hard but the more hospital parents I talk to, the more I realise it’s definitely not just me and it’s not a weakness to struggle in this situation but actually entirely normal.

Thank you for replying @INeedNewShoes I’m so pleased to hear you’re DD hasn’t needed any further admissions, but I know lots of outpatient appointments can be a struggle too, hopefully you get some answers soon.

Thankfully I was able to take DS out to the hospital courtyard yesterday for some fresh air, but up until then I wasn’t able to because he needs to be attached to iv/oxygen/monitors. This is quite typical each admission. The plan was to go home today if he could make it through the night without needing oxygen, which he did but then spiked a raging temperature at 6am so will have to see what drs say when they come round this morning.

I have got people coming in to visit at times, and I’m getting better at asking them to bring me food/coffee/toiletries needed but my husband can’t really take much more time off work and we have a 3 year old so my mum tends to look after our 3 year old in the day and then she can sometimes come by in the evening to let me shower but I’m also wary of taking over her life too.

Due to how fragile DS’s lungs are we tend to be in a private room to prevent him from getting further infections while in hospital, which I know is such a blessing as the shared wards must be so loud.

It’s helpful to know I’m not struggling because I’m rubbish at this, I’m struggling because it’s a rubbish situation that everyone struggles with - thank you for taking the time to respond.

Can i join? My daughter is 15 months old and we're on our 6th admission since birth. Each time we're in for around 1-3 weeks. We're 14 days in now. Work is becoming harder to sort out, my other half does what he's able to, and we have my in laws who have been helpful.

Even with the help I just feel so low when we're here. I'm lying on my camp bed listening to crying children and just waiting for my DD to join in. Feels pointless trying to sleep.

God is so grim isn’t it. DS is now in for a long admission, and we can’t stay, but have been in and out with him for much of this year, in both paes and adolescent wards. So so SO tough.

DS hasn’t (until now) been helped in any way by any of the admissions - chronic condition - so it’s been particularly hard to bear. Doctors seem to have no inkling of how terrible it is…

I'm so sorry. That must be so hard on all of you 💐 I find a lot of staff don’t really understand how hard it is and have no concept on the impact this all has on your life outside of hospital.

I am particularly frustrated atm as my daughter is on TPN but is now feeding and drinking normally and is absolutely well enough to be home. But no one wanted to start to decrease TPN over the weekend and we’ve been told it’s a few more days to take her off TPN before she can come home.

I know no one has posted in awhile, but I'd love some support too. Fifth admission for my dc this winter as he's very vulnerable to respiratory illnesses. We are lucky in that we usually get a private room but I find myself constantly eating poorly due to the shit sleep and worry. We are often in 'isolation nursing' too so it's harder to get out in any capacity and little one is not yet at the stage where he can just sit as he's only 19 months.

Hi @Sleepy104888 I’m so sorry you are going through this…it really sucks doesn’t it.

I find it hard to eat well too, and what I do eat is far from nutritious! Have you got any friend/family that are able to visit? I always find asking someone to bring in fresh fruit for me or even just a supermarket salad does me the world of good.

19 months is such a tricky age, does he enjoy bubbles? My little one loves them and they can be played with sitting up or lying down.

After 5 admissions I’m sure you’ve got a good routine but these are a few toys I keep in my hospital bag:

https://amzn.eu/d/ct8pJim - these are great for redirecting if your little one likes to pull on/play with tubes/wires

https://amzn.eu/d/hiistmf

https://amzn.eu/d/fFbKzR4

I have these for my 1 year old but my 3 year also loves them so they are a universal favourite.

Tomorrow will be 15 weeks since our last admission - which is our longest time out of hospital in his life 🎉

Sending lots of solidarity, it’s really such a lonely situation and I’m sorry you and your little one are going through it, I really hope he improves soon.

my top.tip for hospital admissions with my child is to always have ear plugs , warm blankets and phone charger etc to hand.
I also take some of those porridge pots that just need boiling water as they are a warm snack if you haven't eaten for hours.
I also try to go to the hospital shop when I am really stir crazy and stock.up on snacks . I don't worry too much about eating healthily I just have what I fancy to get me through.

Hi @Sleepy104888 . Sorry to hear your little one is in hospital. Private rooms are a blessing and a curse I find. The privacy is lovely but sometimes it's nice to talk to other parents/carers in a similar situation. My 11 year old was in and out of hospital a lot at your son's age. I'm trying to think of what my son liked doing in hospital then. I remember he used to stand by the ward door, hoping that someone would let him out.

We have a planned admission for 11 year old ds4 at the end of February. As usual I am dreading it and I'm trying to distract from without much success.