Reassurance required please

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I’ve had to bring my severely disabled brother into A&E. There isn’t anybody else who could have done this. He’s been ill for this entire year, including sepsis a couple of months ago that resulted in him being put in an induced coma.

DH is in Zurich for work. He can’t get home until tomorrow noon at the earliest. I’ve had to leave my two young DD’s (3 and 10 months) in the care of my DS. He’s 17, he’s responsible, but I’m looking at a long wait in A&E with DB so he’ll probably be caring for them overnight. My parents are away, I don’t have anybody available to look after my DD’s until around 6am tomorrow when my friend can go over. DS has never had them for this long by himself. DD2 is asleep, but DD1 is still awake. DS says they’re both fine.

DB is non verbal so won’t be able to advocate for himself if I go, plus he needs help with literally everything so he wouldn’t even be able to go to the toilet if I wasn’t here.

Would you leave a 17 year old in charge of two young kids? He’s had them for an hour or two at most by himself. I can ask for an appropriate adult for DB, but I know he’ll be stressed if I’m not here. I’m at a complete loss. We’ve already been here for 2 hours and they have just made an announcement that the current wait is 12 hours (!). DB is showing symptoms of sepsis again and I’m so worried

• [Message from MNHQ: please see the OP's update at 13:59 Sunday before responding]

agreed. You’re doing your best in a difficult situation. He’s 17 and these could almost be his own kids. A few hours with him awake and you’ll be fine and hopefully home.

Sending hugs. You have a lot in your plate

What a lovely DS you have 😊

You must be a fantastic mum to have raised such a lovely son 🥰 I hope your DB gets the treatment he needs soon and that you can get a bit of rest. Don't be afraid to be assertive and advocate for DB - does he have learning disability? You can ask for a learning disability nurse if there's one available.

He has cerebral palsy so he can’t talk/walk but he is sound mentally. I’m better at understanding him than everyone else, he usually communicates via cards with his needs on when I’m not around. I know it sounds silly but I don’t want the doctors/nurses to put him in a box that says ‘he can’t understand what’s going on’ when he does actually have perfect understanding. He wants to be kept in the loop re his care and even sat in the relatives room I just know that won’t be happening even though I’ve explained everything

Oh your poor brother. Thank goodness he has such a wonderful sister in you, and that you have such a lovely son who is able to look after his sisters so well. I hope he responds to the antibiotics soon.

I wish I knew you OP as you sound amazing and I would love to be your friend and be able to help you.

Sepsis is confirmed. I’m still here but he’s going to intensive care soon. Last update from DS was that both DDs were asleep. I’ll stay here until DB goes to ICU i think

What a an amazing, awe-inspiring person you are. This is nothing short of amazing to be so kind and I'm sure tired out and working extremely hard. You've raised an amazing son, who is capable, independent, caring and confident. Amazing attributes that I hope my children will have as they grow up. Life is so hard at times, this is a real tough time right now, you'll get through it, sending all the love your way x

I really hope you're brother is OK. Of course your son is a wonderful person because you're a wonderful sister x

Surely your parents should come home, rather than your DH cutting short his work trip? I presume that they are retired and on holiday. Your brother is their responsibility, not your's, particularly as you have very young children to look after.

Just sending huge hugs @blankcanvas3 I hope your DB recovers quickly and you had no choice but to handle the situation as you did. It sounds like DS is an absolute treasure and you should take a minute to praise yourself on how you've raised him as well as taking the time to let him know how proud you are of him for stepping up x

Apologies, I posted before reading OP's updates.

I agree that OP is an amazing sister to provide such fantastic and loving care to her brother and her example is being followed by her 17 year old son. I can't imagine that many 17 year olds would just take the care of a baby and a toddler in their stride and be the one reassuring their mum. OP has done a great job there.

I'm glad that OP's brother has a diagnosis so can now be treated.

We’re still in a&e 😬 He’s hopefully being moved up to ICU within the next hour. My friend got to my house at 6am and they were all asleep in our bed, they’re all still asleep now which officially makes this both DD’s longest lie ins ever! Apparantly he’s even cleaned the kitchen! DH is about to get on his flight. Thanks for all your kind wishes x

I'm so glad things are working out. You have a fantastic son btw.

I hope your brother recovers soon with care that recognises his understanding. Your son sounds amazing. You must be so very proud of him. What a fab mum you are.

You sound like a lovely family and I hope everything works out with DB.

I don’t know if anybody can help, I’d rather not start a new thread! I left the hospital 2 hours ago and am due back during visiting hours later. I’ve just had a call to tell me they want to sedate DB for ‘ease’, when I asked them to clarify it wasn’t for medical reasons, it is just that he’s getting worked up and it would be easier for them to treat him. I’m concerned that he already can’t advocate for himself, and by sedating him they’re removing his voice even further. Can I refuse this? They are allowing me to be there outside of visiting hours (I think because it makes it easier for them if I’m there) but I can’t be there all of the time because of DD’s. I accept he’s probably upset but surely there must be something else they can do other than sedate him?

Have you got power of attorney? If yes the yes you can refuse. If no then you can say no i dont agree. Then they might or might not listen to you.

They should be specialling your brother, giving him extra nursing yime.

Yes, I have power of attorney! I will refuse and see if they can sort something else out. He ideally needs 121 care but appreciate that’s going to be impossible at a busy hospital.

You poor love. How stressful for you. It sounds like you and your son are doing a FAB job at juggling everything. A big fat takeaway for you both tomorrow, I think! Hope your brother is better soon.

Its not impossible, just expensive for them, and will take them a bit to organise Can his regular carers go into the hospial and spend their shift there? I dont know how much carers time he gets.

His carers have offered to go in, but the hospital are saying that only family are allowed outside of visiting hours. I’m tearing my hair out. The nurses told me they’ll have to check with their boss but no news yet. DH and DS are offering to sit with him too on rotation with me, but DB is looking at weeks in hospital and it just won’t be possible for the three of us to do that the entire time

Well done that has been some night for you all. Well done to your son for stepping up.
Ring the ward and ask to speak to the ward sister. Tell her your concerns. He needs one to one special. This is up to the hospital to arrange once it’s requested by family members. He is non verbal that doesn’t mean he cannot communicate. He needs extra time and he needs help and support to get through his daily tasks . The nurse caring for him will not advocate sedating him rather than a special to assist him to recover. If they have, then you need to report this to PALS as this is unethical.
They have a duty of care to your brother. They need to provide the care in the hospital so that you can visit during his admissions and feel reaasured he is cared for.
best of luck and look after your own self care xx

Does PALS have a number you can call? I'd imagine his regular carers going in would be the least bad option.