Hand hold please

[lolly07766]

'm currently sitting up in hospital with my 32 year old son who has severe autism and learning disability.

He's just had half his thyroid taken out, and his parotid gland, he underwent biopsies before this which were inconclusive, he's been in surgery for 5 hours. I feel so bad for him, he's been so brave and so strong. They've just tried to fit a catheter which had him screaming in agony, they couldn't get the tube in. They were going to call urologist but thank god he managed to do a wee, they've given him fentanyl which he is supposed to administer himself, but can't understand what it means or what he has to do plus it's making him sick. So I'm sitting here in the darkened room, hoping he is getting some rest and pressing the button every 5 or do minutes 😢

I'll hold your hand for a bit. You must be exhausted and worried sick. I do hope he manages to settle and get some sleep tonight so you can try and switch off for a few minutes.

Is the hospital vastly overheated and noisy as usual?

Are the staff being sensitive to his additional needs?

Hang in there xx

I'm here too if you need some support and company.
You must be shattered! Hope you manage to switch off for a bit❤️ x

I'm very tired, up at 5.30am, cat broke down on the way to hospital, I'm on a mattress on the floor next to him.
The surgeons/anaesthetists/theatre staff have been fantastic, on the ward not so much.
They don't seem to understand that he doesn't understand the fentanyl button thingy, the nurse told me to press it every 5 minutes, I said I can't possibly do that all night. She said don't worry she would come and do it, she's been in once since 12, I just keep getting up, I just need him to rest and be out of pain. I pray to God that they're not thinking of doing another catheter in the morning, as that what I heard them say in the corridor.

Thankyou so much for your replies

And yes it's boiling hot in here, very very noisy, bleep bleep, chairs scraping, etc etc they're in every 5 minutes for one thing or another. He seems to have settled now though, absolutely breaks my heart to see him like this 😢
Oops fentanyl time again, it made him vomit bright green before too, I hope that doesn't happen again

I hope he stays settled OP. It's heartbreaking to think as your son is the same age as me. He's very brave! Probably handling it better than I would.
It must be hard to sleep when it's so warm with all the noise xx

You must be so exhausted Op.
I know nothing about this medicine delivery system but why is it every 5 minutes ? Is it because Fentanyl is so short lasting? Can they not use a different painkiller? Every five minutes is brutal.

sending positive healing vibes to you and your DS.

im an icu nurse on break, sending love.

For the fentanyl PCA (patient controlled analgesia )there is an option to add a background continuous infusion - in ICU/HDU we have plenty of patients unable to use a PCA, you can query that if you need.

I’m commenting after skim reading but the vomiting post Fentanyl administration is slightly concerning - please raise this to the medics as there’s so many other options (oxycodone, morphine to name a few) and anti emetics (cyclizine, Ondansetron) obviously not all might be options for your son but there’s options there x

Are you and your son in A+E/ assessment unit ?

Pain management wise if your son was my patient I’d be advocating for a primary bolus of analgesia (not fentanyl with the vomiting) then on to the PCA with a background infusion - we see PCA as maintaining the pain relief, often a larger amount is required first. However, in very busy high turnover areas like A&E/assessment units the balance can be difficult. Out of hours pain management even more challenging . An anaesthetist however would cover this. Firstly I think a full medical update and you raising these concerns would be useful. Ward nurses are very busy and stretched but the anaesthetist / team should get on top of this pain as able first before dc to the ward - should being the operative word.

If your having trouble getting it across regarding your sons requirements I’d ask (during the day) to speak to the learning disability liaison nurse - there will be one. Unfortunately general services have a long way to go with learning disability support, as the daughter of an LD nurse it particularly stings.

Also @lolly07766

The PCA is supposed to be checked regularly - everywhere is different but at least six hourly. At this time pain and nausea should be assessed also with clear lines of escalation. Your son should also be getting his obs checked (BP etc) and the surgical site checked. However the wards are so so busy so 99% of the time if this isn’t done it’s for very good reason.

There should be other options for analgesia in addition to the PCA (dependent on what surgery your son had but IV/ PO paracetamol can often make a real difference as an adjunct to opioids)

Sorry for these constant drip of messages - just realised how specialised the surgery was and I’m very surprised if he isn’t on a high acuity ward / high dependency unit / ERAS unit but that is the sorry state of the nhs.

your son should be getting the following I thought id summarise in case it was a bit jumbled before:

1. observations regularly - bare minimum six hourly but each set guides the frequency of the next set. This should cover Pulse, BP, oxygen etc but also pain, nausea, fluid balance and neurological status.
2. more effective pain management, either upping the dose (so can give double the fentanyl every five mins), adding a background infusion, giving a bolus of analgesia, more effective nausea management to facilitate this analgesia, adding paracetamol or other drugs. A pain team review in the morning to ensure this doesn’t happen again.
3. positional turns / checks and check of wound / site - looking for bleeding etc.
4. IV fluids or some form of fluids if he can drink to ensure he doesn’t end up with a kidney injury. Sorry to hear about the catheter - best practice would have been to pass a catheter in theatre but anyway.

I’ve worked in critical care for years in different units and also work bank / agency and in every place for a post op patient this would be achievable. I’m so sorry about his pain management.

Take care of yourself too your doing a fab job of supporting your son. X

I’m an anaesthetist and agree with pp about the PCA/analgesia and antiemetics (anti-nausea drugs). You having to press the button for him defeats the purpose of a PCA - if he can’t do it they need to get the dr back to review his analgesia. And if he’s not getting any antiemetics he should be - ask the nurses for them if they are prescribed (I would be surprised if they are not). If he’s had some and is still vomiting then again they need to get the dr back to review and prescribe a different one. Hope he’s feeling better soon.

Hi @lolly07766 i'm so sorry you and your son are going through this 😔
Hope you get some rest, sending you strength to get through this time xx

Hello All,

I managed probably an hour and a half sleep, the nurse has been in from time to time to press the fentanyl button, he has stayed settled so far.
I'm really grateful for all your replies, they are so informative and helpful. I did wonder about the catheter during surgery, it just made sense to me, I really really hope they don't try again this morning, I think that has been the worst so far, despite everything else.

We have had contact with a disability nurse prior to surgery, he had to have a 'passport' so I may email her this morning, and I hope to speak with the doctors this morning. It's soo hard as I ask DS, does it hurt? Are you in pain, and point to the sites, and he just says 'I'm Okay' so I just don't know how much pain he's in and how bad it is.
I knew he was in pain with the catheter as he was screaming out in agony.
I'm hoping the pain from the surgery is bearable for him.
I will speak to the doctors when they come round this morning and hope and pray DS manages to do a wee!

Good morning, how was the rest of the night for you and your son? Has there been any update this morning?

I'm still holding your hand from afar

Oh how incredibly tough for you both. I hope your DS is as settled as he can be this morning

@StickyFloor Aw you sound so lovely!

Hello all,

Thankyou so much for being with me throughout the night last night.
DS has improved slowly throughout the day, he's stopped being sick, is no longer clammy, and is a good colour, they have changed his medication and he's managed to use the toilet so no need for a catheter (thankfully)
He's been drinking and keeping fluids down and has eaten some toast, he's currently dozing.

I was feeling very sad last night, but you all helped me through the small hours.
The sun is shining today, I've had a shower and the best thing is DS seems to be on the up.
MN is a great thing in times of need and once again a Thank You all!

Fabulous update!
I hope things continue to be so positive. Well done x

So glad your DS is feeling brighter and you are too!

Hi @lolly07766 so glad to hear your DS is ok 🙏 x
Hoping we get some sunshine today too 🌞