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.

She needs an OT assessment of the home , the hospital discharge team should arrange it, please demand it and if it doesn’t happen for whatever reason, go to both gp and your local adult social care/ social services and request an at home assessment

It sounds like you might be in the US considering terms like backyard and the fact a pool at someone's house was involved? If so, it will be difficult for people to advise since the systems are incredibly different here.

If you are in the UK, she should be having some discharge plan meetings going on and this would also include making sure it is a safe discharge with OT and physio assessing your home and making sure it is suitable for your sister.

My son became disabled at 8 after complications from an illness and he wasn't allowed to be discharged until we moved house because it wouldn't have been a safe discharge.

Firstly, I am very sorry to hear about your sister and you sound like an amazing, loving person. From your spelling and use of language, l, like others, am thinking that you are in the USA and this is a UK based group. Much though we would like to help and advise you, procedures will be very different from ours. However, there are many posters here from other parts of the world so, hopefully an American poster will be able to give you some relevant information. I hope your sister will make a swift and full recovery.

Pools aren’t usual either.

o/p as people have said this is a predominantly UK based site. If you aren’t in the UK the system may be very different to navigate.

if you’re in the US then you also have to factor in cost and insurance which does not compute here. Copay, deductible and out of pocket were not even in my vocabulary until I learned about US medical care.

even if we do have us based posters, i suspect individual experience will be based on what the insurance will cover.

Make sure the hospital discharge team is involved in planning her return home. Before she comes home, ask about what adaptations, equipment and support she will need. In the UK, your local council can arrange an Occupational Therapy assessment and advise on grants or funded adaptations such as ramps, hoists, accessible bathrooms, widened doorways and other changes that may be needed.
In terms of therapy, I wouldn't think of it as something that has to start immediately or be forced on her. Everyone processes major trauma differently. The important thing is that support is available when she's ready, whether that's counselling, psychology services, peer support groups or talking to other people with spinal cord injuries.
I'd also ask the spinal injury team about assistive technology. There are voice-controlled phones, tablets and computers, eye-gaze systems and accessibility features that allow people with very limited movement to use technology independently.
Most importantly, don't feel you have to solve everything before November. Focus on what needs to happen for the first few weeks at home. The practical and emotional adjustments will take time, and it's OK not to have everything figured out yet.
Personally, I'd add that a C3 spinal cord injury with ventilator dependence is very complex, so the family should be pushing for detailed discharge planning rather than trying to work it all out themselves. The hospital's spinal injury specialists, occupational therapists and social workers should be heavily involved before she's discharged.

Do not seek advice from people online including me! - check the above in bold speak to the professionals.

Yes to charity supports, currently in a specialised unit with my teen and yes you should have an OT (unit one plus local one ) but some of these earlier replies are idealistic. We have had to pay out for adaptations as local authority wouldn't look at any applications for adaptations until after home and I wouldn't do that to my child. This is not specific to my LA as patients here from all over and their LAs have been just as useless. So speak to unit and there should be charities based there - certainly are in the one we are at, plus admissions are long.

You really need to say where you are located.

Also, what have your parents already organised? If she is coming home in November then all the arrangements should already be made for her care, in the UK someone would not just be 'sent home' like you are describing, without there being a LOT of arrangements made first, if at all.

@Andoor OK, we need to back up a bit here as it very much depends on where you are as to what support is available.

Certainly in the UK the hospital team would have got support teams heavily involved before your sister was even considered for discharge and they would have done a full home assessment and got teams in to ready your home for her return or discussed where her longterm needs could best be met.

Now sometimes this can be focused on the practicalities of daily living and not, shall we call them the social aspects of life. Is this what you are talking about? The home is ready and waiting fully prepared but you want to knwo how she can have some independence?

Well the good news is that there are alsorts of gadgets out there that can help your sister, gadgets that can be controlled by mouth or keyboards that can be controlled by eye gaze, so she can still use phones, social media, tvs, control her curtains, lights etc, just by another means. But it allows her privacy, some practical independence and independent relationships although within new confines.

The thing is, until the body(and mind) have fully healed and this can take a long time, these often follow after the practicalities have been resolved as they are expensive and not something its easy to keep changing etc but also you need equipment for her long term needs and not just her current needs.

But what you get told here, really depends where you are, there is no point in us telling you what the UK services can provide if you are in the States or EU but these things should be available everywhere, its just a matter of who pays and provides for it.

There are also many day centres in the UK where your sister can go and joint social clubs, activities and events with people with similar needs and which also gives her carers a break.

So where is your sister? If its the UK it would be helpful to say which county?

I am sorry I don't have advice, but it is lovely you are looking out for your sister and so thoughtful in this situation. I wish you all good luck x

Horrendous, quite literally a worst nightmare situation.

Do not accept a discharge until you are confident everything is place that needs to be. Speak with OT and social workers, others have mentioned charities and organisations that specialise in these kinds of injuries, get in touch with them as soon as you can. Is the family home reconfigurable for her needs?

Good luck OP, she’s got a big advantage in having a sister like you.

You sound delightful

Again I would echo posters recommending spinal injury charity. They were amazing at supporting my mum when my dad had a spinal cord injury.
In terms of things at home- it's difficult to advise- doorways may need widening, hoists needed, ramps to get in the house and garden
Again from tech- would also advise eye gaze iPhone/iPad with a stand that can be attached to her wheelchair or bed... And communication will be dependent- my dad had a trachea valve so he could speak he had a C5 complete spinal injury but didn't make it past 4 months of ITU. We had communication cards, and he could blow raspberries- 1 being yes, 2 being no....
I would echo the advice lines of contact- the disabled children's charity, and new life as being really good.
Good luck- it's a lot of adjustment- we had looked at selling and buying a bungalow and putting a hoist etc in, with 2 bathrooms so mum didn't have to use the one with a hoist in case carers needed it when she was in the loo/shower....

Sorry I have no real advice, apart from to echo what others have said about not accepting the discharge until arrangments have been made, the hospital should have teams who can/should be dealing with this. But I really just wanted to say how sorry I am - that sounds simply awful.

As others have said, it really is dependent on where you're based, so adding that information would probably be useful.

On a different note, I have a friend who broke his neck when he was young and he's a quadriplegic. However, he's not ventilator dependent. It's a lot so I can understand how you're worrying about both the short term and long term future. Please take care of yourself in all of this.

I don’t think OP is in the UK, so much of the advice on here regarding support systems would not apply.

Hello, are you willing to say approximately where you are? England/ scotland/ wales/ NI or in the usa?

Echoing previous posters that you need an OT. Lots of hospitals have a physiology team that you can ask to be referred to and will guide you through the process. Im surprised they haven't recommended that.

There are lots of charities who may have grants or funding to get her access to devices and personal independence equipment but depends on where you are.

Sending the best

I am so sorry for the grief, I have no doubt your family, but especially your sister are dealing with due to this awful accident.

You need to speak to families in a similar situation. Support groups and charities are the best places to seek them out.

Can I suggest that you are selective about the people you speak to even in these organisations?

Seek out people who are making the best they can of this awful reality and not those people who are in very much in the grieving phase. They absolutely are out there and they make handling something like this feel much more manageable.

Then remember that your sister has a whole life to live, and she will live a whole life. as time is absolutely your friend here, nothing needs to be prioritised except the basics for day to day needs.

That will be enough for the short term as it will be a big adjustment.

You sound like a wonderful sister.

Seing the terminology and language used I doubt the OP is in the UK and without know where they are located a lot of advice given will not be of assistance

sorry this has happened to your dear sister, it must be very difficult and asking for help is natural. That said if you are in a different country people are not going to be giving you the correct advice and it just will not be helpful

Come back and let people know where you are located in the world and then perhaps you'll get much better filtered advised

You say “back yard” are you in America ? You will get very UK based advice so can you say roughly where you are ?
I am so sorry you are all in this situation.

I'm so sorry for what you're all going through. It's not the same but I was bedridden for 6 years in my early 20s, I have no advice though other than to try to make sure she has very regular contact with the outside world, charity groups, video calls, gaming eventually. There are a lot of equipment possibilities to enable this and to even go on walks etc but obviously it is highly dependent on the help and finances she's receiving. Please seek out a charity yourself or your parents to get proper advice x

Totally different situation but I had a back injury that left me temporarily unable to walk. OT assessed my home and support situation and I was provided with equipment to help me manage. Physio and carers were also arranged to come to the home. And this was a short term issue and I still had full use of my upper body.
I can’t imagine they will just send her home with no plan. They wouldn’t be allowed to discharge her.

Sorry to hear about your sister

This may give you some hope ?

https://www.bbc.co.uk/news/technology-46466531

You need an OT input before she leaves the hospital.
Then you can look at what can be done both for day to day stuff and ‘to keep her entertained’

Has she had input from an OT yet or just ICU and maybe some rehab?
Is there any talk about her doing rehab before coming back home?

Op are you in the USA? I note you use the word backyard. Is this an insurance issue?

Probably not the USA given the time of the OP