I'm not but have been accused of being a CF.

[TitsalinaBumSquash]

My son is in hospital, he come regularly for 2 weeks at a time. He has major food issues after being pushed and pushed to eat more and more for 2 years. He now has a gastrostomy but still has to eat 3 meals a day. He has a very, very limited list of foods he will eat.

He will NOT eat anything on the menu on the ward, eating is hugely important we have to get his weight up.

I am on my arse skint at the moment, these trips cost us a lot and I'm self employed so don't get paid when I'm not there.

What I've been doing is taking his meal from the ward for myself (always order a small portion) and then using my very small food budget I'd set aside for myself to buy DS a meal he will actually eat. (I walk to the nearest Tesco and get a ready meal for £1)
I figure I'm not taking anything extra from the hospital and both of us get to eat this way.

I've overheard a couple of mums complaining that I'm a CF and should just buy 2 meals a day if DS won't eat ward food. I can't see that I am but thought I'd check the jury of MN.

@TitsalinaBumSquash I'm a reasonable commute from Chelsea but I'm away this week on holiday.

I can't help you this week, but next time (hopefully for you it won't be too soon!) either PM me or tag me. I'll bring you and DS the food you want or need.

Do you have access to a fridge? This thread has made me sad, you must be starving 😔 x

No you are absolutely NOT a CF.

The hospital gives you 1 meal and the patient still eats.

Blessings to you and your DS.

@NettleTea - yes we're in a side room, I'd go ape if they tried to put us in a multi bed bay. No social worker attached to the team.

No tax credits we don't qualify for any benefits or grants other than DLA.

You've all been so kind, thanks offers of food, if I'm ever in need I'll give those of you who offered a shout. 🙂

OP definitely isn't doing anything wrong and I wish you and son nothing but the best.

One more thing, and I feel stupid asking - can anyone tell me what CF stands for?! Newbie here and I'm pretty sure it's not cystic fibrosis as in the glossary of abbreviations!

CF = cheeky fucker

You’re not a cheeky fucker at all. Bitchy people are just that and no idea why, they can spend a pound on their own meal if they are somehow jealous of your tiny portion of hospital food. Ignore them and carry on. At least this way you are both eating something and that’s the main thing.

I'm sorry your DS has to be in hospital so much. We also have many and long hospital stays and it's so hard and expensive! You are absolutely not a CF! This way, food isn't wasted, your son gets something he will eat, and you avoid going bankrupt in the process. I'm shocked at the bad manners of the judgy parents. Hope they come across the thread and feel ashamed.

🌸🌼🌺🌹

Now that really is CFery, how do you think that's ok??

ManorGreyhound - how is it not ok? If I was taking food out of my child's mouth and leaving them with less than they wanted then it's definitely NOT okay, but that's not what's happening.

The reality is that medical staff come around between 7am-7pm. The minute you duck to the loo will be the minute you miss someone who has nipped up with a form to sign for an MRI which suddenly has a spare opening which you then miss and you can't be discharged until you have it. Sure as eggs the minute you go to the cafeteria will be the time the consultant chooses to come around that day, the second you have left to make yourself a cuppa in the parents room on the ward is the time they will come to take your child away for a test or to take blood and so on. I learnt very early on that holding out all day and waiting until 7.30pm when it's safe to get your only meal of the day from the cafeteria is absolutely foolish when this way works better.

Its true.
I don't think many people understand that being in hospital with your child isn't just about sitting about.
My OH never got it until he had to do it, right at the end.
He thought I just watch DVDs all day.
Sometimes you can't leave their side. If you do, something happens.
It could be something as annoying as missing the menu run or as crucial as being with them when someone comes and does something really painful and scary to them.

Cheeky Fucker! So obvious when you see it :) Thanks!

OP is definitely not a CF so!

The reality is that medical staff come around between 7am-7pm. The minute you duck to the loo will be the minute you miss someone who has nipped up with a form to sign for an MRI which suddenly has a spare opening which you then miss and you can't be discharged until you have it. Sure as eggs the minute you go to the cafeteria will be the time the consultant chooses to come around that day, the second you have left to make yourself a cuppa in the parents room on the ward is the time they will come to take your child away for a test or to take blood and so on. I learnt very early on that holding out all day and waiting until 7.30pm when it's safe to get your only meal of the day from the cafeteria is absolutely foolish when this way works better.

this absolutely. and with cystic fibrosis there are things being done ALOT.
When my daughter was in the local hospital they used to have a trooley that came round. They fed payients first. Then they fed siblings and parents who were staying on the ward. Then they fed anyone else who was staying.

When we stayed in the Kings childrens ward they only fed my daughter, however we managed to get put into the Ronald McDonald house and they let my son have my daughters place in the hospital school (we had a 6 week inpatient stay end 2016, so just before SATS for my son) They did offer my son snacks. And my daughter had the kids menu, the speciality menu (had a whole range of regional foods for the diverse inpatient population) the adult menu and they would, at a push, cook specific things she wanted.

Now we are on the adult ward they still allow me to stay in her room (4 week inpatient stay this Feb due to sepsis) my son cant stay now, so he has to be sent from pillar to post at home. During half term a friend put us up near New Cross. They have a ward kitchen so can pretty much cook anything you want at whatever time you want. They also offered me AND my son food.

OP do they have a CF adult unit there? Are you at the Brompton? do they have a kitchen that could be accessed for your son?

We are at the Brompton and he'll likely stay here when he moves to adult care.
There is a parents lounge that has microwave/toaster and kettle but no cooker so ready meals in the microwave are good.

We can ask for basic things like baked potatoes/plain roast chicken breast and we have the call menu for CF patients but it's quite hit and miss where he's so fussy. He's a grazer anyway so he struggles with 3 meals a day. I usually bring lots of snacks with me but we're really short this month. We're being transferred to our local on Thursday so that will make life a lot easier, I can get some shifts and work and take him in food from home everyday if needs be.

You're right CF patients have so much going on at the hospital, physio/consultant/dietician/lung function/bloods/school/X-ray all going on, every time I leave the ward I get a call to come back. Yesterday I went to the loo and he coughed and his gastrostomy flew out, then I had to wait for the surgeon to come from another hospital to get it back in. His emotional state is varied so a lot of the time I just have to be there to hold his hand and reassure him that everything is ok.

Huge hugs to you OP. It must be very, very hard. I'm nowhere near you so can't offer any practical help - but I hope that the hospital transfer goes well and makes life a little easier for you

What's a CF please?

If you were on my ward I would congratulate you on finding something that works and I would be seeing if we could provide meals that your ds would eat.
You are doing a good job op.

I know the NHS probably can't afford it but I wish parents in hospital with a child could be fed too. It must be tough trying to sort out food when you're on a budget and there's limited cooking/ prepping/ storage options. YANBU at all, I assume they wouldn't just accept not giving him a hospital meal at all so your way is saving waste.

@Motherofajuggernaut it's a cheeky fucker which OP is not!