To have no idea how I manage my life around my daughters illness

[Throwingitallaway24]

Feeling quite fragile as I’m back in hospital with my daughter for the sixth time since she was born last year so some kindness is appreciated.

My daughter has an ileostomy as a result of a bowel condition she was born with, and she’s in a position where if she gets unwell particularly with tummy bugs it’s straight to hospital to go onto fluids and we basically just have to wait until the bug goes away which is usually around 1-2 weeks. This was somewhat okay while i was on mat leave. However since returning to work six months ago, she’s been hospitalised twice with illness. I work full time admin and while work have been supportive in the main, this time I can sense a bit of an atmosphere in the messages I have received from work while I’ve been in hospital with my daughter. I’m not an idiot, I know I can’t just go off for two weeks at a time on no notice. But I can’t help it either. My daughter is only young, her dad has used all his annual leave up supporting us with the hospital stays and doing some overnights so I can get some sleep and a break. We have family who help as well. We don’t live local to the hospital that she has to be treated at so it costs us a fortune sometimes in hotels because I can’t make it home and back quickly. There are sometimes rooms available for us at the hospital but they’re in very short supply.

this is all so stressful and I’m fairly sure I’m going to be sacked eventually. I don’t even feel mentally well enough to return to work tbh as each hospital stay is so exhausting and stressful. My daughter’s situation isn’t likely to change anytime soon so we’re looking at probably around 3-4 emergency stays a year. We never know how quickly she’ll recover either so I can’t definitively say to work when I’ll be back. I have to speak to my managers manager again tomorrow morning and I feel sick.

I will be applying for DLA when we get out, but I wouldn’t be entitled to any other benefits if I lost my job as my partner earns too much and has savings but it’s not enough for us to live off of. I’ve no idea how I’m meant to manage this in future with my work/career. I have a place to begin studying paediatric nursing in January and I so want to retrain and study but I just don’t think I can make that work.

any advice or support would be super appreciated.

As OP has mentioned many many times in as basic English as anyone could manage. Her DH is doing all he can.
I'm sure what she doesn't need at this time is to continuously have to defend her lovely husband.
They have exhausted the options with him.

Worth seeing if the Rainbow trust operate in your area: Where we support | Rainbow Trust Children's Charity

This is why women are so badly affected when a child is ill
Work ( even with a so say “healthy” child is affected by their illnesses)

I remember work being phoned while I was on a horse- it was the school.
DS had mumps!

Had to put horse away immediately and cycle to school to pick up DS ( couldn’t afford car !)

Ear infections, heavy colds, tummy upsets-
Finding work to fit around school hours back then was so tough anyway- without factoring in childhood illnesses.

My son has an ileostomy too, though he is 8 so much older than your daughter. He's had his for 7 months now due to a bowel blockage which turned out to be cancer but things became more complicated when he developed septic shock and went into multi organ failure. His bowel has never fully worked since then so he needs TPN as he doesn't absorb food like he used to.

We've been in hospital this whole time, he's now in remission and the only thing keeping him in hospital is the fact that TPN can't be done at home without extensive training which takes a lot of time so we're hoping that he can be reversed and his colon will absorb enough that he won't need TPN so we can finally go home.

Can you ask to speak to a gastro social worker? They will be able to help you fill out the DLA form as it will be such a big help and it takes time. Ours took 18 weeks in total go through. I'm unable to work, it just isn't possible when you have a child with complex needs.

I'd ask your work about childcare days, most employers have carers days and has to accommodate parents of children with illness and disabilities.

Your the main carer so this is going to happen and of course your not going want anyone else to care for DD when she's ill and work shouldn't expect you too. Look into your rights as a parent of a child with long term illness/ disability it'll leave you less stressed.

Hope your DD is well soon.

@KidsDr
Thanks for answering. I came across an AI post the other day and Ive been trying to see if I can spot others. There was nothing wrong with your reply, I think the way it was laid out seemed extra tidy. 😊

Since you are looking to switch to a nursing career in the future anyway, could you look at a job as a healthcare assistant on your local health boards bank? They are 0 hour contracts however as the nhs is so short staffed there are usually enough shifts going that you could work as much or as little as you want. It means you can choose to not work when she’s in hospital and then pick up more shifts when she is well. Obviously no job security and no sick pay when you are off but it might take some stress off and it will give you experience in your chosen field.

It sounds really tough for all of the family. Can only sympathise.

My only advice would be if you are thinking about getting a new job, try and hold out until the changes to employment law under the Employment Rights Bill kick in. It includes enhancements to unpaid parental leave so you are entitled to take it from day one of employment rather than after 1 year of service and flexible working rights becoming the default from day 1, with companies having to say yes to requests unless they can prove it’s unreasonable.

Sadly because of how slow our government legislative system is, it probably won’t be passed into law until 2026.

Link below with some more details if you’re interested:
https://www.bbc.co.uk/news/articles/cy0l19j9jgko.amp

Hope your little one gets better soon.

I’m so sorry you’re going through this, your DP and little one too, of course. It’s so awful to see your tiny child ill.
Does the hospital have a Ronald McDonald House attached?
I don’t know if any of the organisations listed here are any help https://www.soft.org.uk/support-while-your-child-is-in-hospital and here
https://www.bliss.org.uk/parents/support/useful-organisations/full-list-of-useful-organisations

I hope things get better for you.

So sorry to hear of your daughters illness and what you and your husband are going through. I wish your wee one all the very best for the future. Does the hospital have a Ronald McDonald House which may help you with accommodation? I really hope that your workplace are able to help considering the circumstances and if they don't, contact ACAS or a union if you're a member. Another option may be working from remotely home/hospital. Please contact the benefits team as you may be entitled considering your daughters condition.

"As OP has mentioned many many times in as basic English as anyone could manage. Her DH is doing all he can.
I'm sure what she doesn't need at this time is to continuously have to defend her lovely husband.
They have exhausted the options with him."

No, she just says he's used up holiday while she is taking weeks off work and talking about going off long term sick. He's not doing all he can, he's now leaving it all to her. Using up holiday is not exhausting all options. Like I said, when my DD was in hospital last year both her parents pulled their weight so we both managed to get our work done. It would be incredibly difficult for one parent to do it all on their own and hold a job down.

It is a horrible situation to be in and having been there myself OP you have my sympathy

Please ring and get the paper application for DLA straight away. They give you 6 weeks to fill it in, and if it's awarded the payment is from the date you rang for the form.
You can take your time filling the form in and take a copy so you have a record for the next time you fill it in.

So sorry, just read that working remotely isn't an option as you're with your child all the time. I would use all of the sick leave available and don't feel guilty as your child is No1 x

This is a ridiculous response… who can afford that?! And a young ill child wants their parents. A nanny isn’t there for sick care neccesssrily and many probably wouldn’t do hospital cover!! Some people are so out of touch with reality

I’m so very sorry.
I can’t help you with any of the practicalities because I’m in the States, but I do empathise.
My friend had a baby with tummy troubles - I think he was 18 days old when he had his first surgery on his intestines.
He cried all the time.
I’d relieve her, and he’d cry for 3 hours straight, even if I held him in my rocking chair.
I think he had 3 surgeries total, but he had such a miserable time of it, the poor little guy.
He’s almost 40 now and he’s AOK.
I know this is hard on you, I know you’re worried about your baby girl and your job and about money and you’re exhausted and you don’t know what will happen.
But babies grow up and they get better and there will be other jobs and opportunities and the money will work out.
It just will.
Just take a few minutes to breathe and remember that you’ve got this. You’ve got your husband and he’s got you and the two of you have got your baby.
Your mama didn’t raise no sissy.
You’ve got this. ❤️

You would also be entitled to New Style Jobseekers Allowance:

https://www.gov.uk/guidance/new-style-jobseekers-allowance

If she has a central line, could you be taught to give IV fluids at home? To minimise hospital stays. I'm
A paediatric nurse in a children's hospital and I know of a few families of children with stomas who do that?

Good luck if you do go for Paediatric nursing though, it really is the best job in the world!

Hi OP,

I have a somewhat similar situation. One thing that I found helped was to be scrupulous about giving DS 150g readybrek (adjusted by age) so he definitely got his 100% RDA of vitamins every day. I make it into biscuits. He stopped getting gut viruses entirely as long as I gave him it every day.

Ironically we have one just now, but that literally normally never happens.

I'm sorry to hear you have this situation. It sounds really hard for all of you. Well done for looking after her so well.

Could you possibly look at temping? If you are a good admin person then maybe you could keep up your skills this way? I agree with others that nursing isn't possible at the moment. If you have to take a full break until she gets a little older I would still suggest temping but also keeping up to date with technology via online learning.

OP your employer isn’t allowed to sack you if the reasons you’re unable to attend work are related to a disability EVEN IF THE DISABILITY ISNT YOURS. (Equality Act 2010)
The act covers the carers and parents of disabled people, and given that your daughter’s condition is likely to be classed as a disability then the act protects you from discrimination as a consequence. Do not resign or leave.

Honestly I wouldn't worry about work. She needs you to be there and you need and want to be there with her as we all would in that situation. At the end of the day in 5 years you probably want to have a career change anyway so if you take your maximum leave at work does it matter? Also as others have said if something happened to you tomorrow they would have a job advert up by the end of the week. It wouldn't be a great look to dismiss someone because their child is hospitalised so they'll be treading carefully. I'd use up all sick leave and then look to leave.

If you want to move into nursing anyway what about a health care assistant job. 2 shifts a week is 24 hours plus if you got DLA or whatever you can on top of that would you be able to afford that? Bank might be helpful but you wouldn't get sick leave so something to factor in in your calculations. Plus it's much easier to manage 2 days a week at work than..my DS had a planned op recently and I was able to work the mon/Tues before he had it then had one week off and didn't work again until the sat/sun of the following week so had almost 3 full weeks with him just using 1 week annual leave.

I agree with this, I think you should look at doing HCA bank/locum work.
That means you put your name down to do HCA shifts, either at the hospital or in the community.
You will never be short of work, I guarantee that.
Then, when you're unable to work when DC is ill, you simply tell the bank/locum team that you're not available for 2 weeks.
It's true you will lose out on holiday and sick pay though, and that is a huge thing to factor in. But it will remove the stress of dealing with a permanent job in your situation.
I really do sympathise with you.
My children are ill quite regularly, both have underlying health conditions that make them ill quite often. I work too, and it's a total nightmare. I get so stressed about dealing with work when my children are sick, and becausei have 2 children it's constantly one or the other. I can't go in to work a lot when they are ill which is really stressful because work get really arsy about it. Bit I also have to leave my DC a lot when they are ill because of my job, at some point I have to go in whilst theyre still sick, and I can assure you that makes me feel like the worst mother in the world because my children really need me. But if I didn't go in I'd lose my job.
I am a nurse, and my colleagues and manager are NOT sympathetic. They are all so overworked, tired and stressed that when I call in to say my child is sick and I can't come in, all they feel is stress at an increased workload.
I strongly urge you to carefully consider proceeding with nurse training at this point of your life. I don't see how you can study for a degree plus do practical placements whilst caring for a child who often gets sick and requires hospital admission.
I'm so sorry for you and your child. This is a really hard and stressful situation for you.

What bowel condition does she actually have, and are you under a good consultant for this. What does the consultant say to try and reduce the hospital admissions, because 6 is obviously a lot in a year.