My recently disabled sister is getting discharged from the hospital soon and we're lost.

[Andoor]

I'm sorry if this isn't the place to post about this topic, but I don't know where else I could.

So, in August my sister (who is currently 15) had a diving accident which unfortunately left her paralyzed. She was at a friend's house, they were having fun at the backyard pool there and at one point she decided to dive headfirst into it. Her head hit the bottom and she broke her neck at C3 level, leaving her quadriplegic and ventilator dependant.

She's been in the hospital since the accident and is supposed to be let out and come home in November. Me and my family really aren't prepared for everything all that well. We want her to be comfortable and have time to process everything still and get used to the changes. We've tried talking about how to move forward with anyone we could and some people suggested we should do therapy, some said we shouldn't even think about therapy because that's just gonna stress her out more, some people told us to leave her alone for some time... it's all really confusing honestly and we don't know who to trust and don't want to be too pushy. We've also been looking into ways how to she can at least keep herself entertained independently like maybe getting some things so she can use a phone or maybe her laptop but we don't even know where to look and what's actually worth anything.

As I literally have no idea what direction to even look at, I thought it would maybe be a good idea to ask for advice here on as I saw some threads about similar things, so I made an account here. If anyone personally dealt with a similar situation or had someone close to them go through this, please give any advice you can. I'd really appreciate anything at this point.

I just wanted to write to say that you are an absolutely amazing sister looking for ideas like this, its incomprehensible what you have been through / are going through and I wish you and your sister the very, very best.

If she's in hospital surely they can advise about the therapy and equipment she might need? It sounds like you have just been asking random people who obviously won't know what would be best.
And where are your parents in all this?

Oh my goodness - I am so sorry, your poor sister.

I agree that the hospital needs to help you get prepared.

Also, if you're in the UK, I'd really recommend contacting Back Up (backuptrust.org.uk) and the Spinal Injuries Association (spinal.co.uk).

They can help with everything from emotional support and connecting your sister with other young people living with spinal cord injuries, to practical advice about rehabilitation, independence and assistive technology.

I'd also ask her rehabilitation team about an assistive technology assessment. There are some remarkable systems that allow people with very limited movement to use phones and computers independently.

And I wouldn't rule out psychological support. She doesn't need to be pushed into talking before she's ready, but having access to someone experienced in helping young people adjust to spinal cord injuries could be really valuable.

Good luck xx

when you say "some people" have suggested X and others have suggested the opposite - are any of these people your sister's doctors or other trained medical professionals? or trained staff from charities dedicated to quadriplegics?

That is where I would start.

Have the hospital not mentioned a discharge plan with OT involvement for any equipment required at home. The hospital will also be the best to advise on therapy.

My understanding is that she should be in a specialist unit and there would be a pathway to support like this. So it shouldn’t be down to you to organise.

Are you UK or elsewhere? That will make a substantial difference to the sort of advice you need. At 15 your sister should have some of her own opinions on whether and what options she would like for talking therapies. The hospital should be guiding you on continuing care at home/ how to safely use equipment/further therapy needs.

@JustWalnut well done on the high levels of empathy and compassion there 😠

@Andoor I'm so sorry to hear about you sister. Have you tried any of the online support groups, they may be able to sis as she may need specialist voice activated items so she can use them.

I would ask for advice and direction from her medical team. I’m sure they will also be able to sign post you to charities or support organisations for her specific medical needs too.

As a previous poster has suggested, contact the Spinal Injuries Association and Back Up. They both have helplines and will have very knowledgeable advisors who can support you, your sister, and other family members

@Andoor

In which part of the UK are you based, OP?

Obviously this is an awful situation and I’m so sorry for your sister and you as her family.

The hospital managing your sisters care will plan the discharge looking at all possible support available and ensuring she and you know how to access it. As a 15yo newly ventilator dependent quadriplegic, she is not just going to be sent home with the expectation that the family will just get on with it.
When you say you don’t know who to trust, who have you been speaking to? The people you need to listen to is the MDT looking after her on the ward and any support services (such as Backup) that she’s been referred to

The hospital/social services are supposed to/should produce a discharge/care plan to make sure the aftercare is in place and any equipment has been supplied and care staff/nursing/OTs have been been informed and available.

The care plan should include your needs and abiltities as carers.

Dont accept her discharge until everything but everything is in place and you and your family are happy

https://www.nhs.uk/social-care-and-support/care-after-a-hospital-stay/planning-to-leave-hospital/

Are you in the uk ? I have quite a lot of professional experience if you can give a bit more info ?

She needs an OT. They will be able to assess her individual strengths, values and goals as well as the social and physical environment she lives in and will be able to plan interventions and adaptations that will help her do what she wants and needs to do. I assume OT would be part of hospital dx planning.

I'm so sorry. I would agree with the above and also suggest to get in touch with backup Services for Children and Young People | Back Up, they can support both yourself/your family and your sister. The nurses at Support Hub - Newlife Charity can also be helpful to speak things through to and they can signpost you to resources and services in your local area.

In terms of immediate practicality for tech, you can set an iphone up to be almost completely voice activated, there is a guide here Set up Assistive Access with other accessibility features for iPhone – Apple Support (UK). You can link Alexas to Samsung TVs to make them hands free, and can also use Alexas to control lights which provides her some control over her environment.

This. I’m very confused by this post. Are you in the UK and how old are you? Your sister would currently be within a specialist setting who would understand her needs, and her transfer home would come with specialised equipment and services, it’s extremely unusual you would be left to ‘figure it out’ so something is not connecting here.

Op please state what country you're in, and if you feel you can, what area and people will be able to give advice. A significant portion of posters are UK based on MN so may not be the best resource if you aren't based here. Sorry your family is going through such a difficult time.

I too thought the OP wasn't in the UK. We don't usually say backyard in the UK. Because if so the advice and help avaiable won't be the same for all countries

I thought this, also backyard pools are certainly not common here. If OP is Europe or US then the advice will be very different.

Most importantly, this;

Dont accept her discharge until everything but everything is in place and you and your family are happy

You can refuse to accept her back home if there is insufficient care or support in place. Hospitals are always trying to clear beds. Do not let them push your sister out until you are ready for her.

And I’m so so sorry for her and for you that she’s had this terrible accident.

The best thing you can do is start searching for relevant support groups and charities online. You will need all the support you can get and you will need to speak to her about it all and also put her in touch will similar groups for herself who can support her as a teenager with a new disability.

It really is all about managing her quality of life and supporting her with the new adjustments. I would start a go fund me as the costs involved in accessing the various equipment in order for her to sustain an acceptable quality of life for her condition will be huge. She will need electronic devices she can operate with her mouth and voice if she can't use her limbs.

She may not be physically able but if the mind and cognition are intact then there are no limits to what she can achieve outside of the physical. Teenagers like to learn and be entertained. You can focus on that for now.

I am so sorry, how tragic for you all. You sound like a wonderful sister.

Is this your usual communication style? If so, sheesh.

This is my area of work - you need an OT, a social worker, a speech and language therapist, Spinal Injuries association and Back Up Trust are incredible and can support with adjustment, advocacy, practical and emotional support. It must feel very scary, and you won’t ever feel 100% ready to bring her home because you’ve all gone through a huge trauma and there will be a massive adjustment. But you deserve and need to feel more ready than you are from what i’m hearing. Often they will put forward a proposed discharge date, but this often changes and do not be pressured into that. Do you have a major trauma or spinal nurse co-ordinating her care and discharge? Does she need more time for intensive rehab on a specialist unit? Community rehab is very much self management so encourage her if offered a specialist rehab. Also has she had a home visit yet??