My Son Was Discharged & We're Having A Rough Time

[nide44]

Well, Adam was discharged from the Hospital on Wednesday 12/12, and has gone to stay with his sister and her family. She thinks she's prepared to help him and is the only one in the family who owns a home that can be made accessible. I live in a home with the first level impossible to get a wheelchair up to, and a ramp would have to go up 4 1/2 steps and be longer than there is sidewalk in front of the house. His mother lives in an apt that is totally inaccessible and would've had to move (one month just isn't enough notice to prepare, for most people). His girlfriend did move, but - to a town house that is not accessible (on purpose, I think).
(that's a whole saga & drama that's best left 'let be' for the moment).
But he's out of hospital care and 'released' to the family.
The first day was a disaster.
My daughter was frantic when I called to see how things were getting along. She hadn't called me, so I called her about 3 pm yesterday.
she has a husband and 5 kids, the oldest is an 18 year old 6' son.
There were difficulties with cathing, with hourly necessity to do something.
He felt if he had to be cathed constantly. He was depressed and crying. Her husband was late to work (he's a teacher and has early classes) because he had to help move him from bed to chair--she couldn't manage it. Her son is afraid of moving him from bed to chair and vice versa. He wasn't bowel trained for 4 days at the hospital (arrgghh!) and felt ill and uncomfortable with no appetite. His chair was new (manual chair- the power chair is 'in the process' for about 1 or 2 months). There was no air mattress for the bed. He couldn't sleep. He was demanding all thru the nite and my daughter was exhausted with no sleep. She hadn't had time to feed her children (her husband was at work).
And on and on and..............!!
I went there Thurs, nite to try to see what I could do for her. There was little I could do, except that me, a 62 y.o. man and not in the best of health- managed to do the bed to chair and chair to bed transfers, alone – without the slide-board. Its not that hard.
Its all in leverage (true he is 190 lbs and a bit of strength is needed). I was able to do it, so why the drama? I also tilted him in his manual chair, every 20-30 mins for about 5 mins, but we gotta figure a way to do that so that its not necessary for a person to be behind, holding the chair for 5-8 mins in a tilted position- that hurts the arms & wrists, etc. There's gotta be a better way. I was able to assist so she could go upstairs and fix dinner for the kids
I guess we're all in a state of confusion and shock. I've been there after work each nite and things seem to be getting a little better but not much. I arrived last nite to find that he'd not been out of bed all day (no one to transfer him in the a.m. - she's gotta learn to use the Hoyer lift - I thin she's intimidated by it, no real instructions except a VCR & she's not even had the time to sit down to look at it) then him not feeling well and running a fever, then a case of really bad diarrhea just before I arrived. Complained of being extremely hot (fever) and a strange body-wide feeling of disorientation and malaise that was difficult (I still can't understand his symptoms) to figure out. Lying flat for a few minutes helped. We don't have a BP cuff or monitor. It may have been a BP fluctuation, I think. Keeping the room lighting off, & him lying flat seemed to be best.
He never has had a PCP or internist and the hospital didn't tell us that it was imperative that he have one to treat UTI's and all the other things that are going on.
We've gotta find one fast (hope we can) that'll treat him, and is familiar with SCI problems.
If anything goes wrong, well just have to call 911 and hope.
Overwhelmed isn't an adequate enough term for her overload at the moment.
It might be best if we did have to do that and his rehab hospital would re-admit him for
additional treatment. I think he's just not ready to be out this early. (My RN wife thinks he might have to go to a long term care facility for a while) He still has medical issues, and needs more in-patient therapy. If not- well....we will just have to try to cope, I guess.

[darkeyed_daisy]

Bob
I am so sorry yall are having such a terrible time. My hospital didnt do much for us in the way of discharge either but that was nearly 18 years ago. I cant help you but just know you and your family are in my thoughts......Sounds like he really wasnt fully as independent as he should have been before discharge. Some things you cant learn until you "are thrown to the wolves" so to speak.

I hope things get better quickly for you......(((((hugs)))))

[betheny]

He's sick. We don't run fevers unless that house is like an oven or we're sick, we tend to run cold. We usually take on the temperature of the surrounding air.

Feeling like he needs cathed all the time, fever, malaise, sounds like a symptomatic UTI to me. We all get them in rehab, seems like. LOTS of fluids here, cranberry juice. There's really no fighting an active UTI w/out antibiotics, though. If you can't get him to the doc, ER it is imo. If they admit him I hope you can stay with him as much as possible. Hospitals are scary places for the newly sci'd.



If this keeps up, take him to the ER. Before you do, print out info on autonomic dysreflexia.

http://njdc.org/takeaction/detail.php?id=615&sub=4
The ER won't know what you're talking about. This is a big problem so brace yourself. We go in sick and they don't know how to treat us. He'll need an advocate, it's hard to defend yourself when you're ill.

You mean to tell me the rehab did no bowel care the last 4 days? What's up with that?

You guys will have to take it one step at a time. Your daughter needs some time to review the hoyer info, can you provide her w/ it? (I can not believe the rehab didn't brief her on this!) I hope the nephew can be encouraged to help. He's not going to break him by handling him but he might by not handling him, imo.

Can't anybody show up with casseroles and a bag of salad for the kids? Gawdamighty.

You can pick up a blood pressure cuff for 30 bucks or so at walmart or the local drugstore. You might also consider the UTI test strips. They're not 100% accurate but if it's positive you'll know what his problem is.

Yep, he needs a pcp asap. Until then I guess the ER doc is his new best friend.

I'm so sorry. Going home is overwhelming for all of us but this sounds awful. Try to remember, one step at a time. Prioritize. Probably nobody's going to die, and that which does not kill us leaves us alive to fight another day, I guess.

Fingers crossed, for all of you.

I should add, I'm not a medical pro, just somebody that's been there. Please believe things will get better. Your daughter wasn't properly prepared, and some things can't be prepared for. The chaos WILL die down as ppl become comfortable with new routines.

Does his loaner chair have anti-tip bars? You might try leaning him back on those for pressure reliefs. Stack some pillows behind him so if they give way (God forbid) he doesn't crack his skull. I've never heard of it happening, but obviously it could.

Again, he needs to pound the fluids, it will help w/ the blood pressure too.

BTW, going home in loaner chairs is hellish. They would frustrate a saint. He'll feel better when he can be more mobile. It took FOREVER for my w/chair to get to me!

[paramoto]

Wow Bob. As I read your thread I felt as if I was reading my own story. I hit rock botton when the in-patient rehab people at Jackson told me that I had to go home because I could not take full advantage of in-patient treatment because I had a TLSO (body cast), a severely broken left wrist with zero weight bearing clearance, broken ribs, etc. etc., They sent me home without dealing in real world bowel program, dressing, etc., lots of theory, little practice.

My wife, sister and mother were a wreck. My kids were at home overseas and it was probably the worst period, highly uncertain and a mess.

Things have gotten a lot better since. I lead a quasi-normal generally happy life and have learned to overcome most difficulties. ONE HAS TO DEVELOP A VERY SHORT MEMORY FOR THE INCONVENIENCES, OBSTACLES AND DIFFICULTIES, otherwise I would go crazy. Like they say, shit happens, solve it, try to ignore it and move on. Eventually I think most of us develop that armor, and deal with it the best way possible. Your son will do the same.

Have not read your posts in a while. How is his recovery?? I know it is still very early for anything remotely definitive, but has he gotten anything back??

Regarding transfers. They do sell transfer belts that with a transfer board make transfering a lot easier. When I had 0 weight bearing clearance they had to use the belt and the board. It is worth a shot.

I don´t know what else to say other than the fact that I think the overwhelming majority of SCI make it through this point and lead productive lives. It is not easy since on top of everyone else´s difficulties in life, we deal with SCI. But it can be done.

Well, Adam was discharged from the Hospital on Wednesday 12/12, and has gone to stay with his sister and her family. She thinks she's prepared to help him and is the only one in the family who owns a home that can be made accessible. I live in a home with the first level impossible to get a wheelchair up to, and a ramp would have to go up 4 1/2 steps and be longer than there is sidewalk in front of the house. His mother lives in an apt that is totally inaccessible and would've had to move (one month just isn't enough notice to prepare, for most people). His girlfriend did move, but - to a town house that is not accessible (on purpose, I think).
(that's a whole saga & drama that's best left 'let be' for the moment).
But he's out of hospital care and 'released' to the family.
The first day was a disaster.
My daughter was frantic when I called to see how things were getting along. She hadn't called me, so I called her about 3 pm yesterday.
she has a husband and 5 kids, the oldest is an 18 year old 6' son.
There were difficulties with cathing, with hourly necessity to do something.
He felt if he had to be cathed constantly. He was depressed and crying. Her husband was late to work (he's a teacher and has early classes) because he had to help move him from bed to chair--she couldn't manage it. Her son is afraid of moving him from bed to chair and vice versa. He wasn't bowel trained for 4 days at the hospital (arrgghh!) and felt ill and uncomfortable with no appetite. His chair was new (manual chair- the power chair is 'in the process' for about 1 or 2 months). There was no air mattress for the bed. He couldn't sleep. He was demanding all thru the nite and my daughter was exhausted with no sleep. She hadn't had time to feed her children (her husband was at work).
And on and on and..............!!
I went there Thurs, nite to try to see what I could do for her. There was little I could do, except that me, a 62 y.o. man and not in the best of health- managed to do the bed to chair and chair to bed transfers, alone – without the slide-board. Its not that hard.
Its all in leverage (true he is 190 lbs and a bit of strength is needed). I was able to do it, so why the drama? I also tilted him in his manual chair, every 20-30 mins for about 5 mins, but we gotta figure a way to do that so that its not necessary for a person to be behind, holding the chair for 5-8 mins in a tilted position- that hurts the arms & wrists, etc. There's gotta be a better way. I was able to assist so she could go upstairs and fix dinner for the kids
I guess we're all in a state of confusion and shock. I've been there after work each nite and things seem to be getting a little better but not much. I arrived last nite to find that he'd not been out of bed all day (no one to transfer him in the a.m. - she's gotta learn to use the Hoyer lift - I thin she's intimidated by it, no real instructions except a VCR & she's not even had the time to sit down to look at it) then him not feeling well and running a fever, then a case of really bad diarrhea just before I arrived. Complained of being extremely hot (fever) and a strange body-wide feeling of disorientation and malaise that was difficult (I still can't understand his symptoms) to figure out. Lying flat for a few minutes helped. We don't have a BP cuff or monitor. It may have been a BP fluctuation, I think. Keeping the room lighting off, & him lying flat seemed to be best.
He never has had a PCP or internist and the hospital didn't tell us that it was imperative that he have one to treat UTI's and all the other things that are going on.
We've gotta find one fast (hope we can) that'll treat him, and is familiar with SCI problems.
If anything goes wrong, well just have to call 911 and hope.
Overwhelmed isn't an adequate enough term for her overload at the moment.
It might be best if we did have to do that and his rehab hospital would re-admit him for
additional treatment. I think he's just not ready to be out this early. (My RN wife thinks he might have to go to a long term care facility for a while) He still has medical issues, and needs more in-patient therapy. If not- well....we will just have to try to cope, I guess.

[ergvepeog]

Hi Bob...

I'm sorry that things are rough right now... When Don came home, things were just as rough and he's a lower injury. Luckily, our neighbors were very supportive. I work full -time seeing patients in ophthalmology and when he was released, at least Criag Hospital had prepared us pretty well. Luckily, we had a good PCP.
I can't believe that he did not have his BP right before discharge... The rehab place should have had supplies either shipped to him or sent with him:

caths, lube, magic bullets, pads, wipes, BP cuff, etc, etc.... if they didn't then it's going to be up to the family to make a list and go to the med supply place... we have an entire area in our basement devoted to med supplies to make sure we don't run out.

First priority should be some sort of schedule for cathing, eating, bowel program, and getting a decent overlay for the bed...

I would call the rehab place and speak with the social worker staff and complain big time! Betheny is right on.... AD needs to be checked out ASAP.

Be very careful about lifting and transfering... not so much for the patient but for who ever is doing the assisting... you can really injure yourself if it isn't done right...

Keep us posted Bob.....(((((Hugs)))))

[rfbdorf]

This is just not right. Have you or somebody been talking to the nurses in the rehab facility? It's the job of someone there to ensure that he could have proper care. Either the rehab provided substandard training and preparation, or it was not taken advantage of (since you are here I rather doubt the latter). Call them now for guidance.
Be very very careful, or someone else is gonna get hurt transferring him, then there will be two people to take care of.
Do what Betheny said.
If you don't have one, also get a thermometer so you can verify any fever. It sounds like he needs to see a doctor.
It's hard enough even when everything's set up and running smoothly. As I said above, call the people at rehab and ask for their help.
- Richard

ps - As ergvepoeg says (she has other good advice), make sure he has a decent mattress ASAP. At the very least get a cheap eggcrate foam overlay - right now - while you're looking for a better one. He is a great risk for pressure sores. Don't let him go another night without something.

[betheny]

If this weren't so awful it would be amusing. Nowhere else in the world could you find a bunch of people that remember this particular nightmare so vividly and just wish they could help to make it a little easier.

When it has happened to so many of us, why does it have to be so traumatic? Rehabs could make it so much easier on people...

[rfbdorf]

If this weren't so awful it would be amusing. Nowhere else in the world could you find a bunch of people that remember this particular nightmare so vividly and just wish they could help to make it a little easier.

When it has happened to so many of us, why does it have to be so traumatic? Rehabs could make it so much easier on people...

I think they try (although maybe there's a counterexample here), but there's so much to absorb, it's like drinking from the firehose. Maybe the last day in rehab should be with only guidance - no assistance - from the nurses there. But then there's still the stuff like a mattress. The hospital arranged for a hospital bed for my wife. The mattress was like a bloody rock, but there it was, and there she was. Perhaps the rehabs need to make a well thought out list, and then to ensure that everything on the list is ready before the patient goes home.
- Richard

[SCI-Nurse]

I am so sorry. It sounds like he had a horrible rehab. We would never dream of discharging a family so ill-prepared.

I also suspect a UTI. His urgency and frequency of needing to be cathed, the fever, malaise, disorientation, etc. means he needs a trip to the ER or urgent care NOW. Get a culture and sensativity and get him started on an antibiotic. Be sure to check with them on Monday to see if the results are back and he is on the correct antibiotic. If he is still having diarrhea, then he needs to be checked for both an impaction and c. diff. infection.

He must have a PCP. It was negligent of his rehab doctor to not refer him to one. Call him back and insist that they make a referral to an internist or physiatrist who does primary care and knows SCI. Take him right away for a check-up, and to get familiar with this physician.

Find out if he has any insurance coverage for home health. See if you can get an RN to come to the house for an evaluation. They can deterine his needs for care, help the family learn what they were not taught in rehab (like how to use the Hoyer....a JCAHO violation to not teach someone how to use DME prescribed), etc.

Your daughter and you MUST use the Hoyer. Insist on this. She is risking serious permanent injury, and so are you. There is no way to do a safe "quad pivot" transfer. Go over there this weekend. Put her in the Hoyer and show her how it feels. Make her use it with you on it. I hope there is no carpet in his room...that only makes it worse. If there is, consider investing in some of those under-desk office mats for using with rolling office chairs (check out Staples or Office Max). Make plans to take out the carpet if possible...it makes it much more difficult to use a mobile lift.

Isn't his injury level C5? He should be able to do an independent side to side weight shift in his manual chair. They were also negligent in not teaching him this. A lean forward weight shift is also an option with help, but much easier for the caregiver. To do the first, he needs to hook his arm behind his chair push handle, then let himself hang as far over the armrest on the opposite side as possible. Check with your hand under his ischium to be sure he is clear. Then repeat on the opposite side. To do the lean forward, sit in front of him with a pillow on your lap. Put his arms between his legs, and lean him as far forward as possible with his chest onto his thighs. Hold for 15-30 seconds, then sit him up again.

If you are doing tilt backs, his back needs to be no more than 45 degrees from the floor. Sit behind him in a chair. Stand on one of the anti-tip bar brackets to get him back to the balance point, then sit down in the chair. Tilt him back so that the back of the chair is sitting on your thighs (don't hold him with your arms) and just let it rest here (his head should be on your chest). Stand up to bring him upright, standing on the anti-tip bar bracket to control after the balance point (and be sure to hold him so he does not fall forward). Hold this for 30-60 seconds, and do it every 30 minutes.

Once you get a chance, write this all up and send a letter to the hospital director, the director of the rehab center, and if they are CARF accredited, to CARF as well. Even with the short stays now days, this is unacceptable as far as family preparation.

(KLD)

[wheelz99]

also, injecting him in a home where his sister has a family of 6 to take care of is a huge disruption. he needs 24 hour attention right now and she can't be expected to provide it even though it's the logical choice. find someone who can take over his care a.s.a.p. and work toward getting into a place that is suitable to both of you.

you cannot go 4 days without a bowel program. ever. unless you want him to get very ill. every other day is about the limit of what can be done safely and even then he may need to get on a daily. some do it in the morning, some at night. the main thing is to get on a regular schedule.

there are alternatives to cathing as well, one being an SP tube, or the more recent remedy of constructing a new bladder so you can cath from your belly button which he'll be able to do himself.

[NorthQuad]

Bob, I'm sorry your family is having a rough time at the moment. This injury is so unfair not only to the person that received it but to the close family and friends as well. I'm glad Adam has a loving family to take care of him. It's just too bad the hospital didn't prepare you all properly for the huge undertaking.

My mom, sister and myself were given at least the basic knowledge before going home from the rehab hospital. But really, it's so difficult to be prepared for such a devastating situation, especially when unknown factors come into play such as fevers, and bowel changes.

As for weight shifts while in a manual chair, as a C5 myself I pile pillows on the couch to a comfortable level, take the anti-tipping bars off, put the brakes on and lean back to relieve pressure or just to relax. You wouldn't have to hang on to him and he could have a pillow behind his head at the same time. As he get's stronger he will be able to shift his weight on his own.

A side note, when I lean back in this way my bladder fills much faster, so you might have to watch his doesn't overfill if he has lack of sensation and can't tell how full it is. The reason it fills faster is because fluid builds up in my legs from lack of movement. I wear TED stocking to help my legs from swelling too much. Since his injury is so new I thought I'd better ad that in so you were aware.

Just tell Adam to hang in there for me. I can remember when my injury was still fresh, I honestly wondered if I had been sent to hell. I didn't think life would ever be worth living again. Things might not be cherry but I'm sure glad I didn't die. Things will change, the more he moves and tries to exercise the stronger he will become. His body and mind will adjust. He will have fun again some day.

Take care Bob.

[betheny]

Good point about the carpet. We cut up cardboard boxes at the very beginning, to lay over carpet so I could get in the kitchen. And I didn't even have a hoyer lift!

[murrey]

wow

Just coping with the physical is enough. Man i sure hope you find some help there. It brings back memories. Your daughter has to be overwhelmed. I think any support you and your wife can give certainly is helpful. I pray you get through this situation.

[SCI-Nurse]

I am sure everyone is afraid. Nervous, etc...
So, there is less fear in numbers. Right????
I commend your daughter for doing this. Everyone, as many as possible s hould have been trained. Bu tlet's move on.
Also, he needs to direct his care & he should be able to explain how to do things even if he can't do it.

So....set up a schedule for the first two weeks that some one, other than your sister & /orher family is there. 24/7. to help her & her family. Use this as training sessions, support this etc.. also. Always have a primary person with one other caregiver assitnat available for these first couple of weeks.

You daughter has children she needs to take care of.
Train everyone you can now, have a plan. Don't expect her to do it alone & don't say you don't see the big deal.
Is he eligible for home health nurses, aides, therapists?
Then once everyone is "trained" and more comfortable with the process, it will be time for school to start then you can make another schedule with
when there needs to be assitance.

Use of hoyer, transferring-with sliding board? Things to do with 3 people there at first. As more experienced is gained and comfort with it- then you can do it with one person. Try practicing hoyering family members before transferring your son. I used to let my students transfer me- key here is used to. Get in the darn hoyer and have someone who has never done it before and pretend your have a SCI injury and can't move- you will get a glimpse of how your son feels.





CWO

[wheelz99]

certainly everything is overwhelming right now because you weren't as prepared as you could have been, and i know he feels like he suddenly doesn't fit in the world around him anymore, but little by little it will get better as you work through each issue day by day. hang in there.

another tip is to remove the pad from under the carpet. a lot easier to roll on then