To please, please ask for your positive stories of people getting well having been on HDU/ intensive care

[grobagsforever]

DP was admitted last week and moved to HDU last night. They don't know what's wrong. He has fluid on belly, some kind of infection and impiared liver function. There is talk of moving him ti ICU. We seem to be waiting on endless tests. He is 35 we have a three year old and I am 7 months pregnant. I need him . Please tell me your positive stories of recovery from these situations.

The care for adults is massively different to the care for children it seems.

We too had horrendous times over the weekend trying to get fairly routine things sorted out. Getting shitty was the only way to fix things tbh - although I saved that for the really important stuff. We once waited over 24 hours to get MrD canulated because no-one was able to do it and then the Dr that did it didn't check it was in properly and two entire doses of a/bs went into his arm instead of his vein.

Gro - you're going to have to learn fast - about hospitals, staff and what you can expect and you're going to have to push hard for it.

Did you say you're on a gastro ward? Does that mean the hospital doesn't have a specialist oncology ward?

For me too, this thread is bringing back distressing memories, but also a feeling of wanting it to be better for someone else, so Gro, if you have questions or hit a brick wall, try asking here.

The 'care' in the hospital the Op is telling us about is certainly 'different' yes. Shockingly so I think. Op - have they actually confirmed when they plan to start treating your husband? I can't believe you are doing all the nursing, he's aspirating vomit, you're supervising his diet and putting your faith in aloe vera. This is simply awful! How long has he been in now - three weeks? And you've no treatment commenced, you didn't even get IV anti-sickness meds till today. Heaven knows what they were doing giving oral meds to somebody who couldn't keep anything down. That was never going to be helpful. I think it must be very frightening for anybody lurking who has, or may have, loved ones admitted to hospital. Please take comfort from the fact that what the OP describes does not reflect the standard of care nor the treatment plans I have been aware of in my family and acquaintance nor that of many others. What's being described here is NOT what you can expect to encounter. (Thankfully)

Op - hit them with PALS tomorrow.

Mrs Maturin- I want to echo what yellow dinosaur said earlier on the thread. I'm really not sure how helpful it is to Grobags to keep going on about why her DH hasn't started treatment. He's only just come off ICU. He has seen two different oncologists who have said that he is not presently fit for chemotherapy. I think they and Grobags are in a better position to judge than us.

Chemotherapy is not the only treatment option. This is a young, previously fit man who has been in hospital for three weeks. He only got anti-sickness meds IV today apparently after throwing up for days. His wife signed a DNR 'in a blur'. This is NOT a typical experience and it's actually incredibly important that we keep restating that and tbh yes, pushing for more because it is not good care that's being described.

But Mrs isn't just talking about the chemo bunny
She is concerned about the lack of care the Op's dh is receiving.

It is utterly incredible how he is being treated.

People are trying to help. Lots of us have far more experience than we ever wanted of cancer and its treatment and are deeply worried about the dh's experience so far.

No treatment
long delays in sorting out anti sickness meds
no investigations done to find out why he is being sick despite the danger of an obstruction.
DNR for a young man without the OP understanding what was going on
The OP sleeping on chairs despite being heavily pregnant
A drain that needs removing but isn't
The OP being in charge of his diet without support
Now he is aspirating which is incredibly dangerous in someone who is not able to get around.
FGS the OP is about to have a baby and she is having to take her husband to the toilet and he can barely walk.

Its a scandal!

I found the ensure type drinks are tolerated more readily when ice cold op, I hope you have an easier time tomorrow when everyone is back where they should be!

Thinking of you OP xx

It is really important to know this doesn't reflect usual care. Op I really think that if one of the tabloids spot this thread they would be very interested in running a story on it. It's the sort of poor care that would make national headlines as it reads here. A 7 month pregnant lady should not be being left to do all of the nursing including overnight especially with a young child at home and as he has aspirated vomit now that could be construed as negligence. They have left him to suffer vomiting for days without appropriate medication too. That is not right and none if this should be happening in a 21st century hospital in Britain. I think its time to whistleblow.

Hope tomorrow is a good day for you both grobags -as good as it can possibly be.

although the tone of some of the posts unsettles me (I dont know why ) I think they raise important issues so that people dont read op's experience and take this as a benchmark of best care.

OP said the drain needs to stay in as it is still draining.
She is doing some of the nursing because of the horrible situation. She's not being forced to do it.
OP has clearly stated they feel he is too ill for active treatment.
We really don't know the full story either.
Much sympathy to all involved, and also devere and expats especially.
Most sympathy of all to poor OP's DH.

Belleate - re tone, I think that some of us have been posting on this thread for quite a few days and it's just very frustrating and difficult to read what the OP is reporting. It's just all so wrong :( The burden of care that's falling on her is terrible :(

Of course the OP shouldn't be doing the nursing care for her husband. I am in total agreement with that. I just think posters are reading things into some of the posts that Grobags hasn't even said - for example about not receiving any IV anti sickness medications. Grobags actually said that he is being switched to a continuous infusion ie a syringe driver not that he hasn't had any IV anti sickness. She has said that the drain is not being removed because it is still draining.

I'm going to draw back from this thread as I think my input is detracting from the main point of the thread.

Is there any chance that the care is less attentive because op is there ? Being there all day/night can't be good for you, your baby, your dd or indeed in the long run, your dh. 2 weeks on and you still appear to have few answers. If he needs you to advocate for him, being overtired is not going to help.

He has a diagnosis. Terminal cancer. What other answers are there? I dare say the staff are keeping their distance to allow the couple precious time together

OP is a hospice a possibility until he's strong enough to go home? They are fantastic places.

grobags- what has your consultant said about all of this?

No Bunny she said he is being switched in the last day. Previous to that he had just been put on anti emetics but before that he had nothing.

For quite some time.

Considering the excellent anti emetics available I would say that is negligent

No one should have to suffer for that long.

Surely without knowing what type, where and what stage, discussion of treatment options and prognosis are difficult to define. If op has been given that information then she hasn't shared it which of course is her prerogative but others are speculating based on this. Has op got access to Macmillan or palliative care if that indeed it the prognosis?

They have told her he has terminal bowel cancer lizs with a poor prognosis, and that they would treat him but he is currently not stable enough. It may be shocking but it happens. It has happened to three people I know, one aged only 36

Has it been confirmed

I thought they had told OP it was suspected.

How awful.

OP's post on 28th May at 19.02 sums it up