Hand hold while I wait for ambulance for daughter

[StopTheQtipWhenTheresResistance]

Currently waiting for an ambulance for my daughter. Been sent as category 3. She's not been right for a few days now, not eating, not drinking, just laying slumped on her bed. This morning she collapsed in the bathroom and went really pale.

She has a learning disability and complex mental health problems so she can't tell me what is wrong as she doesn't verbally communicate when she feels unwell.

She was in hospital a couple of weeks back due to an infection (see previous threads) so I hope it's nothing to do with that.

I'm so worried, I feel sick.

I can't even imagine how it must feel, must be so uncomfortable and painful. How long did you have to stay in hospital for?

If you hadn’t pushed it is dangerous unfortunately. It can lead to ruptured intestines and sepsis. It’s really rather painful and there is no way at all they should be leaving a NV person at risk of it. You’ve saved your DD so much pain and difficulty. Way to go, mum - hand hold now hand shake :)

Morning @StopTheQtipWhenTheresResistance and glad you finally got a diagnosis and got her to a ward. Are they keeping her in and have you managed to get any rest at all? You must be shattered.

@StopTheQtipWhenTheresResistance I’m very glad to read that the hospital has investigated her bowels, it’s not a quick fix but knowing for definite what you’re dealing with is half the battle.

I’m just guessing but they may want to keep your dd on the ward until they’re confident either you can assist with enemas or they can arrange district nursing. Ideally I would personally want to know that the enemas were working as they expected before leaving but I suspect that might be a bit too much to expect in the current circumstances.

once the blockage has cleared push to keep her on stool softeners for some time afterwards. Constipation stretches the bowels and they need to ‘shrink’ back down otherwise it becomes a circular issue with them filling into the extra space but unable to evacuate properly.

With the benefit of hindsight I suspect any relief that enabled her to smile at you last night was down to the hydration. Being unable to eat or drink properly would make anyone feel horrendous after extended periods.

keep being the excellent mum you are - no one here is in your position or responsible for your dd. It’s very easy to sit in judgement when you’re not the one ultimately responsible for someone else’s health.

it comes from Friends,
who were you referring to out of interest

do they need to do any more investigations
i wish you both well

@StopTheQtipWhenTheresResistance I was in for 3 weeks but my situation was a little different as I have Crohn's disease and my blockage was caused by a stricture in my bowel and had to have emergency surgery and a temporary stoma.

This is a good few years ago when the nhs was functioning not too badly luckily! I had also collapsed and had been sent an ambulance I think it came within about 45 minutes. Luckily I wasn't made to feel guilty about using any resources but I don't think anyone was at the time. No one every suggested I should get in a taxi and vomit in there instead and get the taxi driver to act as a health professional 🙄. A lot of this wasting time thing seems to have come about since the pandemic.

From what I remember of being on a gastro ward usually once you have been to the toilet they will let you go home. However I do think you need some answers as to why it's happening. Like a previous poster said I would be pushing for investigation because the way things are at the moment if you say you will go home they will just leave you to it it's a number off their list.

If I lived in the U.K. with my chronic condition at the moment I would honestly be terrified. I'm lucky enough to live in a country that also has a health service that functions properly. It's not the USA before anyone pipes up about health insurance etc. it's just a normal functioning European country that tbf hasn't had to cope with brexit and the loss of thousands of doctors and nurses. We did however still have the pandemic to cope with arguably more severely than the U.K. did. I am lucky enough that I can get an appointment with my gp either the same day or with in a couple of days. Referrals are pretty fast and there are thousands of very reasonably priced dentists who I can also get an appointment with on the day.
Unfortunately the government in the U.K. have run the NHS into the ground over the last few years. They are the ones to blame not the people who wish to use the service. I honestly never want to come back !

I'll reply more when I've had a sleep but my daughter is staying in again. I've come home to get some sleep and her dad has taken over for the night. I'm going back up tomorrow. I felt guilty leaving and I even cried but I can't physically do another night with no sleep.

Please do t feel guilty for recharging, she has a parent with her.

If you don't look after yourself you won't be well enough to look after you're daughter. She's not alone. Get some rest and I hope she's feeling better soon. Sending love and hugs to you all. X

Sounds like she's in the right place OP. Hope you manage to get some sleep. Look after yourself as well

Unfortunately, I’ve been where you are far too often. We call ourselves the tag team as we make sure our son is never alone. Our hospital is very good and put a mattress on the floor for me to sleep.

Hopefully, tomorrow morning, when everyone is back, a better plan will be put in place.

It is very good that they have found the cause. Constipation can be serious. My DS had chronic constipation and was on movicol daily for 2 years.

Once she is back home and after this initial crisis is better, and her bowels are moving again. I’d really recommend reading up about constipation - the ERIC website is very good (just type in Eric constipation).

Once the bowels have had severe constipation, it just doesn’t right itself for a long, long time.

The dilation they said - I think that means that what happens is that impacted faeces expands the bowel and means it blocks everything. If you follow the hospitals advice this will move out. However the bowel has then been stretched and it just doesn’t go back to normal straight away.

It’s important, if you can, to review her diet. Drinking water regularly is quite important - make sure she has an adequate amount every day. Make sure that she has enough fibre and that she is able to go to the toilet in a relaxed way.

Otherwise it can recur because the bowel, being stretched isn’t as good as picking up the signals. But if you monitor her, make sure it becomes regular again then the bowel has a chance to slowly go back to normal.

I’m just saying that as with my DS, once the ‘crisis’ in constipation is gone, there is often very little help or prevention. But this is really key.

I think you can ask for a health review from the GP and ask whether a dietician could be referred.

Update

Found out from her dad that they didn't give her mental health medications last night which I'm not happy about. I'm up there myself tonight though so will give her them myself.

She's not coping too well with all the noise around her due to her sensory issues but unfortunately the hospital said there are no other beds at all in the hospital. The LD Liaison nurse is back in today though so hopefully when a room becomes available, my daughter can be moved. She's barely slept in 2 nights the poor thing.

She still hasn't had a bowel movement from the enema last night and they are doing another one today. I am aware that the surgical team are giving advice to doctors and have given the plan of daily enemas for a month and taking Laxido. She won't drink that amount of fluid though so Laxido was unsuccessful. I'm guessing with the surgical team involved, that is a possibly of last resort. I'm not sure though.

My daughter also has regular carers each weekday morning and I was hoping they could provide care while shes in hospital. Ive been told by the care provider that they aren't allowed to. Does anyone know if this is the case?

Thank you for all your posts, I have been reading them, Ive just been either run of my feet or sleeping.

as a carer when a client is in hospital their care is in the hospital, ime anyway

Thank you for this. I'm not sure why they are saying they can't so my daughter's nursing team are finding out what's going on and will go back to the social worker to find out why they can't. They are getting paid for the care so surely should be able to give it at the hospital.

i expect there are insurance reasons, confidentiality, processes. conflicts

I think it would be a conflict of interest as your daughter is getting nursing care. Although I'm sure it would benefit your daughter just to see the carers she is used to.

Oh I see. She's not getting the 1:1 care from the hospital staff that she needs though as they are run off their feet. It would just be for them to sit with her and keep her company really.

@Willmafrockfit Sorry I think I misunderstood your post about the care. I'm still tired lol

you may be given a refund from the care company

As somebody the same grade as the Technician that attended OP's daughter, I am a bit offended by some of the comments that we need more training, don't we know severe constipation can be life-threatening etc....There is a difference between constipation, severe constipation, suspected bowel obstruction, suspected perforated bowel and we are well aware of the differences. We can't just take everyone to hospital in the absence of red flag symptoms. Especially if they have learning difficulties and might find the experience distressing. OP/111 weren't exactly wrong to send an ambulance (mainly due to the near-collapse) but this is why we have 8hr waits for category 3s. If OPs daughter's bowel had ruptured and was imminently at risk of death, there might not have been an ambulance available. There are not enough. For reference, some of our guidance when assessing what should be referred to hospital-
Abdominal pain that is cramping in nature.
Intermittent colicky pain associated with bouts of screaming and drawing up legs.
Abdominal distension.
Nausea and vomiting.
Absolute constipation (late stage).
‘Currant jelly stool’ – blood and mucus.
Faecal vomiting.
Bile-stained vomiting.
Absence of normal flatus.
Abdominal distension.
Increased bowel sounds.
Visible distended loops of bowel.
Visible peristalsis.
Scars.
Swellings at the site of hernial orifices and of the external genitalia.

The crew wouldn't have let her walk down the stairs if she had been symptomatically hypotensive but we don't routinely carry people out who are capable of walking. Mainly for their own dignity as well as our backs.

Re allowing carers in - I'm surprised they're not welcoming them with open arms to help support someone with additional needs. My DD with autism and MH issues has been in hospital several times with her carers supporting. Sounds like you will need to escalate unfortunately.

@AnotherVice I think people meant more training with regards to people with learning disabilities and in my experience, I tend to agree with them. Most paramedics/technicians who have attended to my daughter have been fantastic and very supportive but this team were not.

Someone with an LD may not be able to indicate pain and show no outward signs of suffering pain which is why they need to be handled differently. IMO there is more need for them to be taken to hospital because they cannot verbalise what is wrong and it could therefore be more severe than it is presenting.

It was the crews job to help her down the stairs and support with that. It was not just a case of physical symptoms but leaving the house mentally is a huge ordeal. It needed the support from professionals and that is their job. Thankfully she did amazingly well and came out of the house with me but that wasn't guaranteed.

I will be making a complaint once my daughter has recovered.