15 replies to this topic

[Muskie]

I am a nervous wreck, my son will be coming home within the month. First let me say I want him home, but I am apprehensive. The home mods have not even started yet because insurance companies work at lightning speed...not, he has not decided on a caregiver (don't know if he wants my wife and/or I or someone else) because he does not answer the question. We will have to live in a hotel until the home mods are done how the hell is that gonna work? Ad, meds, bowel program, dog, cats, work, winter is coming...I think I need a drink

[paul1404]

wow your going to have your work cut out, so I would have the drink then get busy finding out every thing you can relating especialy to your son's level C5, the goldern rules to sort out are IMHO, pressure sore prevention and what to check and do if he gets one, bowel program, and baldder care, every thing else will come in time but for god sake get these mastered. there's plenty of advice on here or just ask. sorry i could not think of anything else to say at this point. Good luck and remember we were all new to this at one time or another Paul

Edited by paul1404, 27 October 2011 - 02:04 PM.

[KayDub]

You'll be okay, promise! My damage is much much lower I know, but I just remembered the day I got medevaced home from Australia and when my mom picked me up for the airport, with the neighbour's borrowed mini van and a place to transfer me in to lie down she was freaking out. She hadn't seen me connected to tubes and IVs in hospital or put in a wheelchair or anything. It took her 4 1/2 more months to admit to herself I had a SCI and not just a virus that would go away. There's a steep learning curve over the first few days (my mom thought I could just fling myself up the two stairs from the garage into the house... not then that's for sure). You've done an amazing amount of research, so just keep it up. Try to make a physical list of everything you need so you can fill it out and check it off. I do that with everything from my doctors appointments to PT to school now and it helps keep me organised and calm. Have your drink now but also take deep breaths and remember, we are all here for you 24/7 to answer any questions. I reckon it's a lot like bringing a new baby home from the hospital (not to demean or make your son infantile) in the way you're freaking out but necessity and instinct will kick in since you've been preparing for months. I just know you'll be fine, I have 100% faith in you and your wife and your son (and even your pets, my dog has been the most amazing help to me, physically, psychologically, he's no service dog, he's a goofy Weimie who can't walk in a straight line, but he does the trick)

[airart1]

breathe, breathe, hopefully they can at least get the mod on the house enough to get him in the door and a bath, everything else will come along.........

[tomsov]

home mods are a crazy ass thing. Like Airart said, BREATHE. I am not a quad so i have a little more independence, but home mods take a lot of time. Break it down into small pieces. What is the rehab facility using to get things done? Work there with what is going to make it easier for you in the long run. For me i couldn't move into my house for almost a year. The plan was i live with my brother until the renovations were done. What was supposed to take 6 weeks took 5 months. The next couple of months are going to be a pain in the ass don't get me wrong. But this is part of that GIant LEarning CUrve every one talks about. There will most likely be out of pocket expenses for the first few months. I am not sure if you are needed hoyer lifts or anything like that but basics. Shower chair, Handles for a toilet, threshold ramps, I also am not sure what type of wheelchair he is using and how mobile he will be. This is what i am going to school for. ADA Accessibility. To begin with talk with your son on what he absolutely needs. Think of the hotel experience as a trial and error run on what works. I get the cervical spine injuries mixed up with general ability but i do want to help. If you want to email me some more information i can try to help you out more. I enjoy home remodeling and restoration. that is what i want to do but let me know.

[goose]

First thing...calm down..it will be okay. I'm the same level as your son so I'd be more than happy to help you any way. I went to rehab at Shepherd who made you do at least 2 weekend trial runs before being discharged. My first visit home they had set up a hospital bed in my master bedroom. I slept in it 1 night and made them take it out. I was not going to be a patient the rest of my life!

We didn't do any mods until I came home for good which were not a problem. It really takes being there to know what you need. As long as you can get in and have a bed on the main floor, you should be okay. If you could explain your house layout alittle, I could better help you.

Most people rush to do mods before they really understand what they need and end up having to redo . There are alot of simple things that can make life easier.

Don't panic...we'll give you more practical advice than the rehab.

[AlaskaOne]

WELCOME HOME! I can understand your apprehension, but coming home is so good. Getting into the house, getting to bed, and getting into the shower are your main priorities, then take it one thing at a time. I like problem solving and find it rewarding. We had three different beds delivered to the house before settling on one that worked for us. It does work though, coming home that is. We are now in the process of modifying our 45' commercial fishing boat to accommodate my chair and if that's possible getting things to work in your home will be as well. Good luck to you and your family.

[Tetracyclone]

Oh, Muskie, panic is the only rational response. Beyond that, heed advice above.

is the hospital social worker involved in planning? Generally he should not be discharged until there is a sensible place to go.
Talk to Goose.

[Aparr]

I would like to add my analogy. When you bring home your first born child. You have no idea really what your doing with the child. Then through the love and dedication it'll work!

If he wants something done and you don't know how to do it the two of you will work it out together. You will probably make the two of of you's relationship stronger. Sit back and try to relax! It'll b good.

[Muskie]

ya know all you have to do is ask for alittle help on this site and the cavalry comes. thanks everyone. so this is the deal with my home and my situation Nick was hurt on the job so workers comp is involved thus the delay. we live in a small raised ranch 5 ft form ground to door equals 60 ft of ramp which is still on the blueprints that have not been approved. So we can't get him in without carrying him (transferring him is one thing carrying him up a flight of stairs makes me cringe). The bathroom is too narrow to get him in (he is getting an ADA bathroom, yes on the blueprints). we are converting our bedroom, my office and another bedroom (aka the pets bedroom)into his living area with the extension of his own bath. this leaves the wife and I sleeping on the sofa and love seat, until the garage is built with our bedroom above it. Now as he enters the final weeks of his acute care we are trying to figure out how to manage all of this. I can work from anywhere that has an internet connection, but the wife works in a small post office in the middle of the woods. There is no extended stay hotels close that have kitchen facilities and 2 bedrooms, so looks like a hotel with 2 adjoining rooms until we can get Nick in. so that is the deal with housing.

Next is care giving yesterday, he told me he did not want his mom or I, he said it would be just to weird. So we will respect what he said and try to find a good care giver, but from what I hear on this site no one is as good as family. This is something he will have to discover himself. We have been trained on the bowel program and flushing of the cath, but not changing it. So right now cathing is an issue he refuses to talk or think about.

Oh by the way 6-10 inches of snow tomorrow

[Courtney]

Hi Muskie! Glad you all are coming home soon, although it is scary...for both you two and Nick. I know that he doesn't want you or mom involved in his care (and understandable so) However, Caregivers get sick, have emergiences and sometimes just don't show up...so have you two had some actual "live practice" on Nick (they wouldn't let Duke leave until both his dad and I had acutually showed them that we knew what we were doing)I'm assuming he wears an indwelling, but have they talked to you about intermittent cathing in the future? As for your stairs, has anyone spoken to you about a lift instead of the monster ramp? (I'll message you pics or post them below!!) We have a tiny 1 1/2 foot step into our laundry room from the garage, and we use a lift instead of the long ramp. This lift also raises up to 6 or 7 ft!! Might be a better (and easier) option. It's also something Nick can operate with the push of a button.....While in the hospital Duke had an "invol" on himself and had to wait for a nurse to come do a BP and clean up because he didn't want me or his dad doing it....after about 20 minutes of him sitting there in his own "stuff" I finally said to him, you can either lay here and feel sorry for yourself, or you can let me do it and we'll be done before the nurse even thinks about getting in here (maybe being his wife, I could get away with that more so that his parents)....so I hooked him up to the hoyer, transferred him onto the shower chair, did a program and clean up and voila!! We were done....yes, he was mortified at first, but he agreed that I was much quicker (and he was much more comfortable with me) than the nurses and it was just as easy for me to do it.......Now, we have suck a routine, that we are usually done in well under 15 minutes for his program--and we only do a program every other day (you can ask more about that later if you want to) Also, my husband can call, text or skype Nick if he wants to talk (or just vent to someone!!) Duke is only 3 years out....he was injured at 33.....If you can, take Nick to your house and get him in, even if for a few hours....sometimes it's just nice to be home, but it's also overwhelming if there are 20 people there to welcome him in and hover over him while he's there.....Good luck!!!

[wheeliebear75]

I know personally in the beginning I often was left feeling very much like "a baby" with how much help I needed with everything. Could this maybe be part of why he doesn't want mommy & daddy doing it? If he's already gone from having his own place to now having to move back in with the folks (not that you guys are not being great in making these changes in your home for him) is a tough one for a lot of people to take.....salt in the wound if you will....& I think the guys have worse issues with this. There are just a lot of OTHER losses besides just the use of a certain portion of the body....it goes further than that more into psychological losses.

[Taylor818]

Hi Muskie, I'm a very similar injury level to your son. When I was in rehab and had to start considering my options for caregivers, the thought of my mom helping me with such personal things was a tough pill to swallow. However, after a few less than pleasant experiences with other nurses, she is now my primary care taker. There's a lot to take in and process before going home and sometimes some decisions are only made through trial and error, but it does get easier and you learn how to fix the kinks. Also, my rehab facility allowed me to take some of the equipment that I had been using everyday in therapy, like a bed rail and a couple different sliding boards (as I cannot transfer on my own) home with me until I got my own, just to help make my transition as easy as possible. Depending on the facility, this might be an option for your son?

[chris60]

you,ll be right mate' transition to home is alway,s a stressfull time. does your son have a case manager?we cauld not have done it without(my wife and i were in no fit state.....mentally[';./\\.... at the time.i kicked and screammed at the insurance company to get things moving, ended up doing most of the mods with mates and the help of the community.yep, we were scared to death when my daughter came home.still am in some ways(2 years on)but that comes with being a dad.have a beer for me to.things will come together, look at one thing at a time,sort it and move to the next,its the only way i stayed sane.good luck old mate

[Vanessamaee]

Im not the same level, but Im kinda close. But I know just one level can make a world of difference. When I came home from the hospital, all I could do was get in the door. I slept on the couch in our living room. It seemed like the first two months were a living, dependent hell. I had to shower at my neighbors house who had a shower I could get to. But I had to Pee into urinals and have my parents dump them into the toilets and I had to do my bowel program in our living room on a Kamode. I know thats not what you want to hear, but things do start coming together. We did like what you described and put a hole in my bedroom wall joining it to the spare bedroom which is now a ADA bathroom. It took about 2-3 months to get there. Just take a deep breath and take each day at a time, in the begining I was an emotional mess, I was happy one second and then the next freaking out because I didnt know how I was going to do something, especially when it came to driving. The first day I had to deal with the nazi driving instructor I seriously thought I was never going to get my license again. Just take a deep breath and plunge in. Today is my six months since my accident and I look back now and think about how for the last 6 months, I have had tons of people telling me how Im going to live my life and what I need to do in order to live my life, I honestly dont think I do a single thing the way they say, you start to get a routine that fits your lifestyle, just give it time.

When it comes to hotels make sure they know your son IS a FULL TIME wheelchair user. Make sure that theyre bathrooms aren't just "Handicap" Accessible but WHEELCHAIR accessible, also make sure if they are providing a shower bench or anything that it has a back on it. I had to fight with a hotel over the weekend while I was staying in Kansas City because they told me over the phone they had a shower bench with a back that I could use, ends up they didnt. Be very specific with them about what kind of accomidations you need and see if they are able to meet them. If not, if you throw around the ADA word a little bit, they usually start being more reasonable.

Its awesome news though that your son is coming home! Very exciting (: The first couple of months are rough, like someone else said, you dont get a manual when you bring your new born child home, same with sci, no manual telling you what to expect. Just take a deep breath, take one thing at a time, and try and enjoy as much life as possible, its too short to worry and focus on the bad.

[S on wheels]

Hi I am reading this thread a bit late and wondering if your son is at home now and all is well. Just wanted to give a little of my experience. My husband is a new quad C3-C5, complete, only a year out. I have stuck by him through this entire experience firstly as girlfriend and now his wife i.e. stayed with him in ICU and the 4 months at the rehab. Learning everything I could....... everything. We did not have a home to go to after the hospital and moved in with his dad for three months. All they did was clear out the office and built a ramp to enter the house. We showered outside..... thank God it was summer...still chilly and did his program at first in bed and then now finally in the commode chair in his room.
As trained as I am it was still a very scary experience the first month, second guessing my every move. Especially since I am the caregiver.

We got a bit of home care but SCI is a specilized injury and you need people who have actually worked with SCI patients. The nurses and homecare personel were not as informed as I am and it took a lot of training. If you could hire someone from the Rehab center itself to help train a care giver and yourself it would be a great asset. We have had clogged catheters in the middled of the night, invols. at night and right after homecare has left. AD problems from ingrown toenails and a whole host of things. So one must be trained to deal with these issues. Watch out for skin sores. Hope you have a hospital bed at first or someone to do night turns until his skin is tougher. I did it by myself and his parents were I guess too old or not that interested. We don't have the money for homecare and insurance was an issue.

Your son is overwhelmed and in time he will have to ask for what he wants to guide his care but you have to take the initiative and help so things run smoothly so he doesn't feel too much like a burden and then not ask for help. But in time he will learn. Just being home and part of a family unit and doing things for him self like eating breakfast on his own, or rides around the neighbourhood will make him stronger.

He really just needs a warm room with a bed and an accessible shower...shelves or container to organize his medical stuff..... then room to zoom about and tables at his height. My husband is 5'3" sitting in his chair.........tall.

We are now in a foreign country and in a hotel as we search for a home( insurance issues) but the wheelchair accessible shower makes a world of difference and his own work station. Life goes on and we have each other.

They are right, have that drink and just breathe........ and give thanks ask and take help when you can. I know I need it.

S on wheels