Hospital advice

[idontknow202]

I would really appreciate some advice as I'm just not sure what to think anymore.
We have been admitted into hospital since Wednesday after a sustained period of not eating or drinking (7 days) before for my child.
Since being here they say we are going to have to put a drip in, they get upset, they give them a chance to try drinking to prevent the tubes, they have a few glasses and we rumble onto the next day. Each day the same happens. Today they couldn't manage the drinking. They accepted a drip. Took 6 hours (of upset waiting for this to happen) for the doctor to arrive to do the drip. He said I don't want to give you an easy way out and I want a pinky promise you will try a small cup. And left. They can't drink it.
I feel like it's a total waste of time being here and there is no end in sight. I have children at home I'm missing it's frustrating being in hospital.
I will do anything to support my child but wondering what else I can do to support. The ED haven't made it round to see us yet but they're hoping they will tomorrow.

It’s a funny feeling coming home isn’t it. You’ve waited so long for it but now it feels like there’s more pressure on you.

I know the feeling of what will I do going forward. I know it’s easy to say and hard to do but you can’t think too far ahead. Like you say you’ve come a long way, one day at a time.

I’m really glad things are improving. Remember to say to the ED team if things get too much. You can only handle so much mental load xx

Thank you it's really motivating to hear positive outcomes. You sound a wonderfully supportive family 💞
I'm off work now into the 5th week on unpaid leave, I'd do whatever I can but the impact of no wages is hard. It's nice to have a vague timeframe, I know it's so individual but realistically I'm unlikely to go back before the summer holidays then.
Any advice on how to navigate the constant discussion around calories, negotiations of how much to eat, when to eat. The eating team just say do what I can do get 3 meals into her...

I was just thinking of you earlier, and then I saw your message @idontknow202. It is so hard being off work and not knowing when you can go back.

How are you doing? I know this is hard for you constantly being the one to have to try and navigate this. Are you getting the support you need from the ED team? Are they coming to your home? Is your daughter gaining any weight?

My advice would be lean on their support. It is so hard to know how to do this. I did feel like I was getting an eating disorder as I hated meal times etc. I also gained a stone!

I really hope you feel supported. Please keep asking us here if we can help you in any way. I just found knowing I wasn’t alone helpful.

take care xx

There is a new book out this week, "How to Save Your Own Life" by Rachel Clark. It is based on the real life experience of a young woman with autism and an ED. It's maiinly aimed at patients, I think, but probably also useful for families.
On Amazon.

How are you all getting on @idontknow202 I hope being at home and the sun shining is helping you. We’re here xx

Thank you for checking it. Its a really tricky time. The warmer weather brings extra challenges trying to get her to hit her fluid goals but they need her to increase the goal but she can't manage what they first set (1 litre) yet.
Meals we are seeing success for lunch and dinner usually , not full meal plan but a good amount compared to where we were.
She's very very weak, still on bed rest but struggling to have more complex conversations and running out of steam and getting frustrated not finding the right words. She's very isolated in her room too. Eats in her room doesn't really want me to hang around now but I do enough to make sure she is eating it and stay close by after to make sure she is resting after.
Her obs are not doing so great, we've been called back Tuesday instead of waiting til Thursday next week. She refused to weigh in last week and they've warned her she has to Tuesday. This is affecting her intake as she's terrified she won't have lost weight since the last weigh in.
It's all very exhausting and makes me question my own sanity - she refused to eat if she doesn't know the calorie count of the meal, I dream of calorie counting and weighing out.
I feel like we aren't having much progress in tht weekly meetings, she isn't opening up to them even though they have her assessment letter where she shared all her thoughts and worries. They seem to need her to keep repeating her self of why she can't eat.
One day at a time, compared to 6 weeks ago we have made some progress so I must not lose sight of that!
Thank you for listening to me xx

Hello OP . I won’t tell you my full story but we spent two months in hospital with our 12 year old. He will be 18 this Friday. It took a full year until I felt he was back to normal - longer perhaps. It was such a dark time - I was terrified . Every day seemed to bring now bad news - poor bloods , low blood pressure - heart rate so low ( 26 bpm ) we nearly ended up in ICU 🙈! Really could not see the light at the end of the tunnel . BUT- he made a full recovery . It studying for his Leaving Certificate and should get top score . Recovery IS possible , just give it time . So sorry you’re going through this hell x

@idontknow202 you really have come a long way, but this does sound very tough. I know being home is better than hospital, but this is a lot to deal with.

You have been so strong and brave, you are doing a fabulous job of looking after your daughter. I hope you have the support you need. It’s so hard at this stage as she is too poorly to know how much her body is asking to be fed.

Please know the feeling of total doom does go. Like @Dublassie says, so many have been where you are and are now recovered.

Please keep being kind to yourself and remember we’re here for you. You have come so far. We’re on your shoulder xx

@idontknow202 I was just thinking of you so thought I would message. Never any need to respond, but I do know how lonely this life can be and how the feeling of doom consumes you sometimes.

I really hope you’ve had a good week and you feel supported in real life too.

Sending good wishes and support xx

Hello @Pearl97 you always seem to have a hunch when I'm struggling and avoiding life, so thank you for a gentle prod into reality.
I'm struggling with the level of support and the emotional rollercoaster we are on. We had a our weekly check in this afternoon and she refused to talk through the appointment apart from stating she was refusing to weigh in and to tell me she was angry when me for betraying her trust to tell them she's been feeling really poorly and been in bed since Thursday. She's reduced her already very limited in take of food and struggling with fluids as she is hating going to the toilet at the moment.
It's impacting on our whole family, I'm still off work, so much attention is on keeping her as safe as we can manage my other child did something really stupid at school last week and is now suspended from school all this week. She hates having him home, he's actually happy to be home with us as he's hated going in while we have both been home. Work is really struggling without me so I feel guilty about not being there.
I just feel like this is all too much and I'm not doing anything properly in anyway at all!
I feel so moany and what a pity party so I'm very sorry. But typing it out does help!
Thank you for your support , there are lovely people on here xx

@idontknow202 this is so tough for you. I totally get the not knowing how to do anything. I dreamt of running away and was so jealous of everyone and everything. I vowed never to moan again when everything was better - just so you know I moan a lot still!

Are you getting the support you need from the ED team. Do they take your daughter to play cards etc while you chat to them? This is so much for you to deal with.

Is she still refusing to be weighed and are they allowing that? Is there any plan for the next few weeks? It seems to be a lot on you and financially and emotionally I don’t see how you can be expected to keep this up.

Does a very strange part of your brain miss hospital? I understand if it does. The doom seemed huge there but there were people there to help 24/7. Now it’s all down to you.

Have they said if they will send her back to hospital.

Yoi are doing so well. Please know we are thinking of you and we’re on your shoulder during the ED sessions. Things will get better but it’s never as quick as we hope. I remember thinking life could be normal in a few weeks.

Please try and look after yourself. Does your sons school know about your daughter?

Woshing things were different for you and sending you lots of strength and positivity for better days ahead xx

Morning, new day, new challenges, new moans from me!

Thank you, it really does help to speak to people who have lived it and get it.

I do miss the hospital in terms of she was monitored closely and I knew that her medical welfare wasn't my responsibility to gauge when to seek further medical help if you get me. She doesn't tell me know when she feels poorly as she knows I will have to get her checked over and she just keeps herself in bed so I have less reason to notice she isn't well. She feels I betray her trust.
In the ED meetings there is only one worker with us, they try to engage with her but her engagement has dropped and other than refusing and her explaining she is refusing to do her obs she doesn't really engage other than nod to give permission for them to talk to me instead of her.
Our appointment for this week was yesterday afternoon, and we won't be seen again until mid week next week which feels a long time of drifting.
Her worker yesterday explained to her she was refusing tests against her medical advice and we spent 20 mins talking to try and get her to consent to being weighed. She did do her blood pressure eventually but nothing else, and she was so stressed I'm not sure it was accurate as it's usually low and it was on the higher side yesterday as she was so upset.
They let her go without being weighed and said she needs to be weighed next week. She doesn't want to go into hospital, they have reassured her they won't send her back to hospital after a one off appointment like this unless it's a medical emergency again.
I feel like they are letting her continue to lose weight as she isn't underweight yet. She's scared to put on weight, part of why she won't weigh in during an afternoon appointment is she doesn't want it recorded that her weight has gone up unfairly if they compare a 9am weight to a 3pm weight. But she refuses to eat or drink prior to weighing in even if it's a 3pm appointment.
I've read so many books and it all says she needs to renourish and have a spell of weight gain to undo the damage caused. Without this she can't get out of the ED thinking. But they seem to be letting her continue to lose weight.

I'm sorry but thank you for listening - again!!

@idontknow202 I’m glad you’re talking to us about this. Does she see a GP at the ED clinic or a nurse? It seems so crazy that they aren’t more worried about her. I understand you don’t see the light at the end of the tunnel yet.

I do understand that therapy doesn’t help when the body is so malnourished, but this is so hard for you. I suppose they can’t make her weigh? Will they send her to hospital if she doesn’t get weighed? If she keeps refusing she will learn she can just refuse?

I can’t say I know how you feel as no one can truly know how someone else is feeling, but I do get how heavy this must feel for you and how alone you feel. I remember just wanting my old life back.

Has food been an issue for a while? Do you know what the trigger was to it being to this extent?

I always found just talking to really help. I didn’t know half the time what I was saying or typing but it felt like I was doing something proactive by at least telling others.

I will keep checking in, please don’t think you have to reply but please do know people are thinking of you xx

Thank you for being so kind.

They have reassured her that if things start to get too dangerous they will have to send her to hospital - but they won't just decide off one appointment and her have to go from there to hospital if you get me. They have said to her they can't predict a medical emergency and I may have to take her to A&E if I'm worried.
She sees an ED nurse usually, we have met the lead consultant while in hospital and have been seen a few times by the dietitian as well. Our GP has been in contact after discharge and said anything at all I can make an appointment or ring them.

She was under their team last year for about 6 months and did gain weight and was discharged but there was no therapy to prevent a relapse or deal with her feelings. She had severe negative thoughts about her body for 2/3 years and then are argument with her best friend who called her fat and ugly set off a terrible reaction as it was too close to how she felt about herself, she declined over 4 months and became suicidal too and there was support offered with camhs and ED team then, but no therapy. We were discharged from ED in the summer and started camhs mental health for a few months and then that's paused beginning of this year when I tried to get her back in to the ED team unsuccessfully until our hospital admission.
I have tried to get alternative therapy for her to talk to someone else about her generally not just focusing on ED but no one will see her while under the team and everyone has said she needs to be in a place ready to engage with therapy.
She doesn't want to engage as she doesn't want to stop losing weight, she's terrified of gaining any at all or stopping losing.
She was diagnosed with ASD last summer which was no surprise to us and she has been supported since she was younger as if already diagnosed, but she was declined into the service in Feb when they said her ASD traits are her personality which isn't always compatible with ED treatment and being terrified of weighing in can make it all worse.
I just don't know what I am supposed to be advocating for. I think I'm going to email the team and ask for a discussion without her and explore what's going on and options, does that sound alright?

@idontknow202 I totally get how torn you must feel. Your daughter is asking you not to say stuff, but you know you’re the only one that knows exactly what’s going on.

I think you have to ask for more support. Especially as your daughter isn’t letting them weigh her and isn’t eating before the appointments. It means things are sort of worse not better for you - if that makes sense. Even if she felt that she must be weighed etc and they were tougher on her. We were told weigh today or come back tomorrow etc so they couldn’t say no. Is it worth them trying something like that?

The toilet issue isn’t unusual, but it does make it even more physical than it was before. Leaving her alone must feel very worrying xx

Thank you for your message. We've had a rough couple of days, she is restricting more suddenly in the last few days than in a while. A struggle to have a successful lunch, no dinner. I had to ring the duty ED number today for advice as I was very worried as she had refused food for 24 hours and looked so ill. They said to try hard for lunch and they'd call back later. I did manage to get her to have 450 kcals for her lunch. The duty ED worker said we need to follow our plan, that there should be consequences she is aware of if she doesn't complete her meal plan. I said we don't have that, she said she shouldn't know her calorie in take, I said the team know she won't eat without being aware of it, she said our situation sounded surprising. We don't even have this week's appointment scheduled yet.
I'm going to ask for a better plan and more support in place in an email tomorrow morning as I know our nurse is back tomorrow. I feel incredibly deflated and like I'm doing a crap job as she is getting worse in front of my very eyes

@idontknow202 I can’t read this and not reply. You are and have done an amazing job and in your heart you know this. People aren’t supporting you as they should and you shouldn’t have to ask for help.

We were told if the plan wasn’t followed we had to have neal replacement drinks. We also saw a GP twice a week not a nurse. I feel like the ED team need to step up and see that they need to do more. Giving you mixed messages isn’t ok. You’re not doing anything wrong, you’re just not being supported.

You need to be seen weekly and know when this will be. If your daughter keeps refusing weighing they need a plan.

Pleasr know we’re here to help. You are supporting a daughter you love and care for and none of us really know or knew what we were doing. Please ask for help and tell them what you need. I’m thinking of you xx

as you are starting to realise - the help just isn’t there. Been through it all and I’m sorry to say even in patient treatment is a lot of people saying ‘please will you just have some sips’ for weeks and weeks. And talking about nasogastric feeding that never happens. The funding and help just isn’t there. I’m so so sorry you are going through this. It’s just unbearable as a parent.

Thank you both for your messages.

We ended up in A&E and we're admitted last night as she was experiencing chest pains when moving around the house or bad ones walking up/ down stairs which we do limit.
They kept us in and had a meed meeting just now and come back to say even though there are 3 red flags in the meed assessment, the ED team are happy for her to be discharged to the community team again - and someone will be in touch Saturday.
I said I was shocked by that as even a walk across the ward brings chest pains, they feel as a team that it's because she is restricting her intake (I totally agree with this part) and can be managed at home. They said from a cardiac concern point of view they don't feel it's another cause than damage from not having enough blood volume to pump around on exertion and the ED will help address that. I asked if we go home and experience further chest pains what do I do. The ED will deal with that - but they might not call til Saturday (I'm sure he's wrong as they don't even work weekends!) no help for the mean time. I'm shocked, but then am i really as like we've said the support just isn't there.
They're sending her home having had another kg loss, restricting to 500 kcals a day in one meal and with chest pains.

I can’t believe you’ve had to write that. I just wrote a lengthy reply and it was deleted as I wasn’t logged in. It was probably a good thing as I’m so angry for you. This is so wrong in so many ways. Your daughter won’t see how poorly she is if professionals don’t tell her.

My goodness you must feel so alone. She’s still not underweight in their eyes is she? We all know she soon will be. I think you need to call the ED team. They should have visited you while you were admitted. I would call them now and demand they visit you today. This can’t go on like this, it’s so unfair on you.

Plesse message on here so you feel supported, you deserve to be helped so much xx

I remember being so ill before they'd really do anything, sorry she's struggling through this but it's good you're being supportive.

The balance is always very difficult to strike between pushing and trying to take dd along with you.

Thank you for your lovely message. It gives such strength.
We were sent home without even a discharge summary! I did email the ED team and we have a meeting in the morning at 9 - they are suggesting she is added to the dymanic service register to provide additional support and prevent another hospital admission - I'm not sure about it. I have asked for a written plan to follow and more support. She is not underweight yet you're right, but is dropping weight it won't be too long before she is. It's probably why in their eyes there is less urgency despite everything else.
We were awake all last night going from A&E to the ward and lots of ecgs , now to see what the morning brings. Can't thank you enough xx

i Hope you all get some sleep tonight and tomorrow is a better day for you all.

It Doesn’t make sense to wait for your daughter to be low weight, but the service is so stretched that is their criteria - what a crazy thing to have to say out loud hey!

I will be thinking of you all tomorrow. They really do have duty of care to make sure you’re supported. Is it easy for you to get to the ED clinic. Could they do home intervention? I think you may have to ask for the help you need, as much as they should be offering not you asking! Xx

I have been following your dd’s story. But haven’t commented before as I don’t have in patient experience. I am so sorry for what your dd and you, your whole family are going through.

Weight is not meant to be an indicator and WFH can be so different depending on body composition and starting point. You could contact PALS as this sounds like atypical anorexia and you have a history of hospitalisation already, so hopefully would be listened to.

As for finding people, who would work with you/your dd whilst also working with the NHS team, there are people out they. They aren’t cheap. We are using an ED coach, who specialises in working with people, who are ND. I suspected dd was ND and she was recommendation from Mumsnet. She would be fine to do that and isn’t purely because dd signed herself off from CAMHS at the first opportunity she had once she reached 16.

I agree about PALS. Also, adding to the dynamic register can have positive and negative consequences. You don’t want to prevent an admission that is needed.

How did the meeting go? I kept mentioning unsafe discharge. You sometimes have to use their terms to be heard xx