9 replies to this topic

[dbp3060]

I am the mom of a 25 year old son who was in a diving accident 15 months ago and he has been in the hospital the entire time. He has a C-5/6 burst fracture with limited arm movement but is learning to use an electric wheechair. He is still on a small amount of oxygen on exursion, not able to eat yet,has a stage 4 ulcer and requires some suctioning through his trach. I am so scared to bring him home! What do I need to know to expect? What to look for for PT, OT, etc.? There aren't many facilities in our area. How much in-home help will I need? Any advice or information you can share with a new carer taking her son home for the first time, I would very much appreciate it. Thanks

[Maltese Cat]

I am not going to give you advice as I don't have experience with high injuries, I just wanted to offer moral support and wish you and your son the best of luck with the move. I am sure those on here in the know will be on in a minute to offer a wealth of experience and advice. In the meantime, baby steps are the way forwards. keep rummaging around the boards here, and get your son involved too - there is so much help to be had!

[cas]

Like the above post , I can't offer any advice for a high injury, but I wish you all the best and fingers crossed you will find all the information you need on Here. Xx

[snowqueeneh]

My husband is C5/6. I is a very scary time when they come home. I was terrified. I didn't like the power chair in our house because I thought is sounded like it was going to fall through the floor. But things do come together. It's hard to say exactly what you will need to do before he comes home but I can assure you that things have a way of coming together. It took a good 2 months before we started really getting somewhat comfortable with everything.

As for care... we mix it up everyother morning. He has his bowel routine & shower one day which takes 2hrs - then stretches and getting dressed the next day (no shower or anything) and that takes 1hr. I put him to bed every night but perhaps you may want to hire an extra 1hr to do that. The staff available around here wants to put him to bed a 7pm every night and I don't like that, but some people have no choice.

The good news is that if he can get his health back on track he should be able to do a lot more than you would ever expect. My husband has no tricepts, he couldn't feed himself when he came home... but now he eats independantly. He also does a lot more things too. We just take it as it comes. If he wants to use the computer independantly... look for a desk and then try different things. That's how it is. Just try this, try that, and then try this again. Eventually everything starts to work out. Take a deep breath, keep your patience. Things will be alright in time.

I wish you the best of luck and PM me anytime if you have a question.

[Tetracyclone]

Is it possible to bring him home for weekends a few times first? Or is it possible for you to get to the hospital am and pm to manage his care for a few weeks. It is better to learn where there is plenty of support, and even then it will very frightening, of course, because the stakes are high. Stage 4 is serious business. All the best to you both.

[Izziwhizzi]

You will need all the in home 'quality' help you can get so you don't burn yourself out. But the word is quality, concientious, happy nice people only please! Have you got cover to pay for these?

Obviously the sore is a big issue, and you will need to personally keep an eye on that, but it is something that will take a long time to fix.

Everything else will be a slow thing, the feeding, oxygen, and also both his and you and your families mental attitude to his new life.

Good luck, we are here, fire off any questions as they arise.

Izzi

[handiogsmom]

dbp3060, on 10 December 2010 - 07:43 PM, said:

I am the mom of a 25 year old son who was in a diving accident 15 months ago and he has been in the hospital the entire time. He has a C-5/6 burst fracture with limited arm movement but is learning to use an electric wheechair. He is still on a small amount of oxygen on exursion, not able to eat yet,has a stage 4 ulcer and requires some suctioning through his trach. I am so scared to bring him home! What do I need to know to expect? What to look for for PT, OT, etc.? There aren't many facilities in our area. How much in-home help will I need? Any advice or information you can share with a new carer taking her son home for the first time, I would very much appreciate it. Thanks

[handiogsmom]

My son was in an car accident on oct 11 2003 at 15, the best advice I received was from a nurse who must of noticed
that day that I was feeling over whelmed trying to learn everything before he went home, she put her arm around me and said don't
worry life will go back to normal and all these routine will just feel like a just a normal part of your life. well to be honest I thought she was nuts sweet but still nuts, I'm happy to report she was right today all we have to take care of has fallin into place. as others have said it takes time to fall in to what will be your routine and no two will be the same since every person that is paralized is differant. One thing that I noticed is that I don't even see his chair anymore well I do but it isn't the focus that my gaze goes to anymore I just see him unless I actually focus on the chair And I have found out you need to do that every now and then or you don't see whats worn and such. So I'm not gonna say its easy because it is not,its kinda strang at first because its like your child is back in an infancy stage and you had already took him to independence once now you do it again only on a differant level but you have to remeber that this is not a child something else I had to learn I did'nt let him grow in some ways no matter how old he got I still treated him as that 15 year old that walked out the door to not come back again for 3 months. What you need is hit and miss some stuff we use some we don't. Some days are bad some good some days we laugh some we cry the laughing happens more often thank god
the one thing you need is a sense of humor it comes in handy the person you care for needs to know that you are ok just as much as you do this for them they just won't ask it, on mothers day my son gave me a plant on the card it just said thank you mom that made me smile and felt so good the card is still on the plant when I get frazzled stressed tired or just feel like crying (yes that happens I found its best to just let it out like a release valve) I will just go look at the card from my little boy who trys to be so strong hes my youngest so he'll always be my little boy I told him its just some unwritten rule Hope I helped writing to you has helped me so Thank you for the oppotunity

[GoldenYears]

dbp, my hubby is also C4/C5 Catastrophic with injury to the center cord.

Simply stated -- it is scary and it's going to be downright hell for a while. After he gets home there will be a hellish adjustment period that will last about 6 months, then things will begin to jell and calm down. There will still be outbursts and issues, but not the profound initial problems that are so difficult to deal with in the beginning. The intensive nature of your son's care will also develop comfortable patterns for you and him, and will become much easier.

I would advise you to get some training in his care, and get as many other family members in on this as well. You will need help with him. We must provide 24/7 care for PawPaw, that means at least 3 people directly involved in his care on shifts. In truth, 3 people are really not enough. If someone gets sick, tired, or just needs time off, that slot has to be filled. So we involve the entire family in his care. We also learned to accept help offered by family members to clean the house, do laundry, yard work etc.

You are facing a multifaceted and very overwhelming task. His medical care, his Nursing care, all his "stuff", adjustments to the house to accommodate the "stuff", getting him in and out of a vehicle, and the financial weight will be enormous -- just to mention a few of the issues. You will get your bearings, believe me, you will.

I would like to advise you that there are many products out there that can help him and make life so much easier, but many of those items come with a hefty price tag. Take it from me -- there are ways of accomplishing what you need and what he needs, that are cheap to free. For example, there is an inflatable bathtub that is placed in the bed, the Patient is rolled into it, it is filled with water and they are bathed. That bugger is several hundred dollars. However, I discovered Walmart has an inflatable pool the same size for something like $24!! You can hook a garden hose up to your shower (exactly like you would the expensive one), run it to the pool, and you've got a really nice bathtub that he can float around in, in bed, that will be very therapeutic for him (as well as making it very easy for you to bathe him). You empty it with a garden hose, just drain it into your shower or bathtub.

Even telephones for the Disabled are horribly expensive. Get a MagicJack, put that baby on a computer with voice or facial activation with or without computer voice and he has one fine telephone -- for about $20 a year!

I discovered so many things that can help the Disabled and their Caregivers, and I know you will too.

The Nursing care you provide your son will actually be better than what he received in the hospital, even though I know you are worried and overwhelmed at the thought of the intensive nature of his care. He will have one on one care with you, and believe me, you will indeed notice everything that doesn't seem quite right. Superior care is always given by those who love the person who is the Patient. He is more than a Patient to you. He is your son.

Your son's care will be and is extensive. He, you and your entire family will be forever changed from this point onward, but it's a good change. Love really does jump all the hurdles, swims through threatening waters, fights all the demons, and emerges stronger than ever. All of you now have new lives. This is a blessing, I have learned, not a curse.

So my Dear, welcome to the official Donkey Ride Through Hell. Lots of good folks are on that same ride with you, it's a well worn path, a bumpy path that's not quite charted, but just remember you are going THROUGH the hell, you aren't going to stay IN the hell. Hell is deliberately miserable because life is shoving you OUT of the hell. If it was too comfortable, you'd come to enjoy hell and stay there. The fact is, changes have to be made and adjustments made. Those can come with lots of hell and pain. You, your son and your family will make it through the hell and things will indeed get so much better for you all. Just don't give up. When things get too tough, the fire too hot, just say to yourself --"oopsie, what am I supposed to be learning from this?" and "what can I do to make things better".

Have a blessed and loving Holiday Season, and when you need a hug just come on back to this forum. There's always someone here.

Golden

[Courtney]

As a C5/C6 you should be able to get him off of that vent......Talk to some rehabilitation places about that. How old is your son? My husband is a C6 and is in a manual wheel chair. Take it one day at a time. Believe it or not, he should become more independant with time. My husband drives, caths himself, and can get himself dressed. You have a long road ahead of you....