HOME AGAIN ... . . but with mixed blessings

I came home from Silver Stream Rehab on Saturday, October 19, 2014.  At first, all seemed to go well.  Transferred into and out of the SUV with the wheelchair and used the wheelchair ramp for the first time.  Then on Sunday morning, I fell trying to make it to my wheelchair from my bed; had to call 911 for them to get me off the floor and into the wheelchair.

Since then, my leg muscles have gotten weaker and weaker, now to the point that any transfers are impossible.  As a result, all my time is spent bedridden.  The home health agency has completely dropped the ball providing me with NO physical and occupational therapy during the past two weeks.  Nurses have come out every other day to change my left leg cellulitis bandages.  The home health agency has decided to "drop" me because they feel that I am "unsafe" in my own home.  I am appealing that decision.

In the meantime, I am asking my primary care physician about sending me to Duke or Chapel Hill for  intensive muscular dystrophy clinic  intervention.

Each morning from 10 to 12 am, I have CNAs come to my house at my expense, to help with toiletry, bathing and dressing, as well as minor chores such as doing laundry.

I am stuck between the proverbial "rock and a hard place."  Suggestions, anyone???


Jay M. said...

Oh wow, David. I am so sorry. I can't imagine being in your spot. I do hope you can get transferred to Duke or Chapel Hill, that certainly sounds like the best option!

My thoughts and prayers are with you, my friend!

Peace <3

Ellen in Oregon said...

Hgi again- blogger prematurly published my comment so I'll try to finish a 2nd time. Don't bother publishing my message due to length.

Anyway. I've seen a lot of bad medical care providers who are more concerned with potential litigation than the welfare of the patient. Now days anytime hospitals, drs. or care facilities see a patient get hurt or not doing well while on their watch & they don't want to be involved. Most patients aren't like you & know to appeal their decisions. I guessing that when they heard you fell, they immediately consulted their risk management (legal dept.) & that's when they stopped agreeing to come provide OT & PT. Once they tag you as a high fall risk they won't be involved. When I was in my local hospital last month, as soon as I got a room the nurses were putting monitors all over me. When I asked what they for they said they were part of a new policy to prevent falls & the leads detected any movement I made in the bed and the side-rails were locked in the up position. I have been a patient in this hospital many times and never was treated like a prisoner before. When I needed the rails lowered so I could get up to use the restroom, the nurse stood by while I got in my chair & then followed me into the bathroom and when I expected her to leave, she said she had to stay with me all the time - no privacy. I immediately knew that this was being done because the hospital had likely been sued successfully by a few patients who had fallen while in their care and now this new policy was more about protecting the hospitals money than it was patient safety. I asked to speak with the nursing director, told her what I suspected and let her know that I was not going to tolerate having every bit of my privacy rights violated when I was not assessed to be a fall risk. I was fine about the nurse standing by for the transfer and would not transfer again until I rang the call light and the nurse reappeared, but I would not stand for someone staying in the bathroom while I used the toilet. I tried to be nice about it and she agreed. I think she knew that the hospital had no right to treat all patients like potential law suits.
If you give me some idea of what equipment you have for helping with transfers & what your wheelchair and bed situation are I might be able to think of some other things that might get you to be less at risk of falling again once you hopefully get some more PT & OT. It also makes me wonder why your primary care Dr. didn't suggest readmitting you to Silver Springs when you fell & are stuck in bed all the time. Make sure you are moving your legs and peddling your feet, you don't want pressure sores or blood clots after everything you have gone through. I'm sure you know being bedridden is not a good thing at all. I'm glad that you at least having the CNAs coming by every day, but you need more help to maintain your independence. I admire how tough you have been through these recent weeks. PICC lines are great when you need them, but it will be good when you switch to oral antibiotics. Cellulitis is such a nasty infection. One time when I had it in my lower leg I got septic & ran a 106.5 fever. I thought I wouldn't get through it that time, but human being tend not to die as easily as lots of people think they would. You hang in there. I'm really hoping you get the help you need.
Talk to you soon.

Ur-spo said...

Yikes! I hope soon this sorts its self out.