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Hi. I've been going back and forth on posting for the past couple of months. Just when I think things are improving and decide not to post.... nope. Mostly looking for advice and support. There's a lot going on.

My mil (upper 60s) had back surgery August 6. Spinal fusion L3-L5 due to sciatica pain in her right leg. She tried shots and PT and neither helped. The severe pain began in May. She couldn't drive or work her regular duties. She did some sit down work when she was able to drive to work. On August 10, mil had a 2nd back surgery. There was a screw touching a nerve which was causing pain in the left leg and fluid build up on the spine. She was discharged on August 12. She fell getting to bed that night even with my bil there helping her. My bil wasn't able to get her up. Called an ambulance and they took her to ER. She also had complaints of nausea and some dizziness. Diagnosed with UTI. August 14 she had a 3rd back surgery due to a fractured S1 and fluid build up on the spine. No one knows how this happened. Due to the fall? During a prior surgery? She received a blood transfusion on August 16 due to being anemic. On August 21, she was transferred to in hospital rehab to start daily sessions of PT and OT. She told us she was taking various amounts of steps each day. We later learned that these steps were taken not just with a walker, but with 2 people assist (one on each under arm). On August 27, she had her 4th spinal surgery due to spinal fluid on the spine... during this entire time, mil was experiencing hand tremors and extreme anxiety. She has since started talking with a psychiatrist and has started taking medication for anxiety. She was able to lower her pain medications and is off muscle relaxers. She is diabetic and has stage 4 chronic kidney disease. She also does not have a spleen.

Due to all of the setbacks and complications, in hospital rehab was not a success. She is not able to get herself out of bed. Which means she cannot take care of her toileting needs and needs 2 people with her around the clock if standing and 1 if we're going to only use a wheelchair and a transfer board. Insurance denied moving to another rehab facility. She was to be discharged on September 11 to go home. The doctors ran more tests before her discharge date and found there is fluid build up on the spine again. For whatever reason the X-ray team wasn't able to do an alternate procedure to drain the fluid and the surgeon does not want to do a 5th spinal surgery. The doctors requested rehab again, after being moved out of the in hospital rehab unit and back to the orthopedic section. Insurance has denied rehab again and the family has submitted an appeal. We are now in the waiting process for the appeal. They have 25 days to respond. I get it - insurance doesn't want to pay for her to go to rehab and not get better (again). But also, she wasn't ready to receive the rehab services at the time she had them due to other medical issues. Her team is confident she can walk again with more rehab.

Anyone have any similar experiences? Any advice? We're pretty much wait and see at this point.

If she does get discharged to home, she will likely return to the hospital shortly after as we aren't able to keep her safe.

Sigh. There are other issues as well, but that's for another post. Thanks for reading. ♥

So just a clarification insurance denied "inpatient rehab" (meaning done usually in an acute care facility like a hospital and needs to tolerate 3 hours of therapy a day or insurance denied skilled nursing which is in a skilled facility or long term care facility with PT/OT usually 5-6 days a week. She should be able to go to skilled care with therapies unless she has used her 100 days.
You guys can also express that you feel home is NOT a safe option and cannot afford 24/7 IN home care (this is an assumption but usually in home care which insurance does not pay for runs about $24-30/hour)

I'm sorry she is struggling so bad. Back surgeries are often not successful and lead to further decline and bedding for more surgery as the spine continues to deteriorate.

She had inpatient rehab at the hospital. 8/21 - 9/13. They denied rehab at a skilled nursing facility. She has not been there 100 days.

We visited today. She said she walked with her walker from one side of the room to the other. PT walked behind her with the wheelchair. Progress!

We did mention in the family appeal that it is not safe for her to go home and that we cannot afford home care. It's rough waiting in limbo-land, but at least she has care/services while we wait.

I am so sorry she is suffering so much!!!

My mom had multiple back surgeries within months as well. Some for actual back and some for the infection(s). I am sure they are keeping a close eye on that on your end but if anything is out of the ordinary; get it checked out. My mom ended up with an infection of not only her spine but brain. It was a horrible time.

Your post brings back so much of that time for me. It was exhausting. Like your situation; she would be released but not in a position to be alone and her husband has his own set of medical issues. So overwhelming for everyone.

It is frustrating the lack of resources to help and the cost of those that are available.

Fingers crossed you get good news from the appeal.

Insurance generally will only deny skilled rehab in a nursing home if patient is not willing to participate or if she has plateaued. If that isn't the case then you do have the right to appeal. I would also ask for the case manager or social worker to assist with this.
May need to send in updated PT/OT notes again and see if she is ready now. The other consideration is if she has a Medicare advantage plan she can switch plans if there is a 5 star rated plan available she can change to it outside of open enrollment.

Insurance generally will only deny skilled rehab in a nursing home if patient is not willing to participate or if she has plateaued. If that isn't the case then you do have the right to appeal. I would also ask for the case manager or social worker to assist with this.
May need to send in updated PT/OT notes again and see if she is ready now. The other consideration is if she has a Medicare advantage plan she can switch plans if there is a 5 star rated plan available she can change to it outside of open enrollment.

We found out Wednesday night that insurance reversed their denial. She has been approved for 7 days at a skilled nursing facility!! Fingers crossed that she can re-gain her independence and start a new life.

EvenKeel - That sounds awful! It's such a hard place to be.

Tush - the medical care team was very supportive in helping us write a letter for a family appeal. We received case notes and words documenting progress that we included. She does not have Medicare Advantage. She is paying out of pocket through her work plan... that's another hurdle along the way. We will need to switch her to Medicare as primary and find a supplemental for the 20%. This will probably happen when her work insurance ends.

I wrote this yesterday and found the draft this morning... might as well update it!

MIL relocated to a rehab facility yesterday afternoon. She was/is concerned because they don't have a walker for her to use. The nurse said MIL would get one after her assessment. MIL texted my husband at 4am saying maybe he should bring her walker.... give the people a chance to do their job!! She seemed easily confused during our visit yesterday. Hopefully once she settles in, she'll be OK.

Glad she is doing better. If she is 75 and not signed up for Medicare yet then I would urge you all to work with the social worker at the rehab on ext steps. She can either get Medicare and a second dark to cover the 20% Medicare doesn't and a part D plan for medications or Medicare advantage plan. Your state should have a state run program that will hp you look at options during open Enrollment which starts in 2 weeks. However if she has had a significant change, like no longer able to work she can enroll now. This will give her better options for rehab in the future.
Medicare advantage plans roll everything into one plan and offer other benefits like transportation to Dr visits, a card to pay for otc items and even some offer meals after a hospital stay.
There are drawbacks with advantage plans that like commercial insurance want to limit costs and will give you your dc date from rehab and deny acute rehab unless you have specific diagnoses. That's why you should work with yput states insurance planning g program they can compare options and give an idea of what would be better. Given her recent history it may be worth the higher cost traditional Medicare and secondary they are much looser with the purse strings when it comes to rehab and acute rehab and length of stay.

Thanks, Tush. She does have Medicare, but it's secondary due to having work insurance. I assume once FMLA is done, she won't be eligible for work insurance through the group and will have to go on COBRA to keep it. Hopefully we can switch her to Medicare as primary and pick up a medigap supplemental policy either before her insurance ends or at the same time. Her sister said we can't switch yet since insurance is paying for rehab and she's afraid Medicare won't cover it... I don't see they they wouldn't, but not my fight to have. We are 6 weeks into FMLA.

She seemed to be alright yesterday. Unfortunately, the first night, she likely never asked for assistance to use the bathroom. She told me she will just pee in her brief since she didn't have a walker... well, she wet the bed and it took the aide hours to get fresh sheets. The manager asked mil to fill out a complaint form. She did get a walker on Friday and can use it in her room. PT/OT came together and helped her walk around the room. She didn't say much else. She was too busy to go to any of the scheduled activities.

update!

The first week while at rehab, mil was able to push herself up out of her wheelchair and walk with a walker 30+ steps. Last Saturday, she gave us a demonstration of her skills. PT tried to have her step up on a treadmill step, but she could not get her left leg up. She was able to get into the mock car, but she couldn't get out. She has drop foot. PT told her a couple of exercises that she needs to do to build strength in her left leg.

This past week was the second week. There has been little to no progress and insurance as requested for mil to be discharged on Monday. She cannot go up a step. Last I heard, she can't get out of the mock car. We measured her car so they would know what height she needs to be at. She did start wiping herself yesterday, so that's something! DH saw her today and he said she wheeled herself to the bathroom and was able to transfer to the toilet and go without any assistance. Don't know if she used the grab bar on the wall or not.

Mil has 3 steps to get into her house... the final one is once inside the door. So a ramp won't work. She also has a step down into the family room where she prefers to spend her day. We are going to her house tomorrow to arrange the front room for her to watch TV and spend time. We also need to move a desk out of the spare bedroom that she will be using. That bed is lower than hers.

She needs grab bars installed in the shower. We need to figure out how and what she is going to eat. We need some kind of basket or tray for her walker.

Since the front door involves a step, we're thinking that people who visit (OT, PT, home care) will have to call her upon arrival and she can use the garage door opener to let them in.

I'm already dreading next week.

How are things going now that she is home?
Is she getting Home PT, and doing her daily exercises?
Feel free to pm me if you have other questions or concerns.
This transitional stuff is 50% of my current job.

Hi Tush -

She's doing OK at home, but she's also getting 24/7 support from her family. The walker tray that I ordered last week finally arrived last night. Another one will be delivered today as I got tired of waiting for the first one! The tray should help her with her daytime independence. We are hoping she can put stuff on the tray and carry things that way. Especially for her meals.

My BIL and hubs installed grab bars in her shower 2 weekends ago. MIL is supposed to get a shower today with someone coming in.

The 2 brothers are taking turns at night sleeping over. MIL has drop foot and wears a fuzzy brace to sleep in. She wakes up, takes the brace off, goes to the bathroom, and then can't get the brace back on... so she wakes up whomever is there to put it back on. A couple of times a night, from what I hear. I've asked how important it is that she sleeps with this brace. No one knows. She has a different brace to wear during the day with her shoes.

MIL's sister is getting Life Alert for her to wear. I don't know where she is in the process of that. Hubs said he will feel better about leaving her alone once she has the alert... BIL is going out of town this weekend so hubs is basically going to be living at MIL's tonight through Tuesday. I don't think I'll handle it well. I struggled last weekend when we was gone for all of Sunday.

MIL is getting home PT and OT. I think she is doing exercises, but I'm not there. I saw her doing some last weekend, but they weren't the exercise for her to lift her leg to build strength for going up steps (that I saw the PT in rehab tell her to do). She was moving her leg side to side in small motions and making circles with her ankles.

Another concern that we have is that she is still taking pain medication. She worries about running out. Her last surgery was almost 2 months ago. Shouldn't she be on just over the counter pain meds by now?

As far as pain meds go depends on the level of pain she is having.
She may need lifelong pain meds and some are not as bad as others but yeah she should start to mix in OTCs, and stretch time between doses.
However back pain post surgery may never be gone.
That said I would get her a bedside ode so she can transfer safely and not need to take the brace off. She absolutely should be doing exercises to strengthen. This often happens that turns some backsliding between rehab and home therapy. Is there any day institute type places in your region? These can be really good for spine surgery patients and sometimes even do the transport to and from.

I understand some need to take pain meds on a regular basis. But it shouldn't be Vicodin around the clock with an alarm scheduled. Kind of crappy to have back pain after surgery when she didn't have back pain before surgery.

I asked her about a commode chair in her bedroom before she came home. She said no need since she is using the bathroom there with no problems... not sure if she can step at all with her night-time brace. But it's something to consider.

No clue on any day time places for her. Will they wheel her out of the house going down 3 steps? And then back into the house up 3 steps? We are in the process of looking for places for her to move to, but that's a whole nother ordeal for another thread.

She had a shower last week, but it was given in the tub and not the shower with the grab bars. No clue if she participated in the process.

She has a walker tray that she is using to carry things around the house. Especially from the kitchen to the dining room. That seems to have increased her day time independence as she made her own breakfast and lunch yesterday.

Her sister created a chart to use to mark off daily exercises. Just started yesterday, but I think it's a great idea to track and have something to show OT/PT when they are there.

I'd run to a second hand store and get her bedside. Commode the home PT can teach her how to transfer from bed commode and back just using one leg so she doesn't have to remove the brace.

Finding a facility where there's 247 help like an assisted living is a huge challenge and the cost is crazy. But then again paying someone to live with her and be a caregiver is also crazy expensive.

Look into Meals on wheels for her area. It's usually a free service and provides 5 meals weekly and are usually large enough to last more than 5 meals.

Thought I'd share an update on how things are going with my MIL.

Unfortunately, her surgeon prescribed 30 more days of Vicodin. Hopefully, that's the last time he does. He also told her that she can take 1000 dose of Tylenol 3 times a day. So she immediately ordered a large bottle from Target. She told DH that she will take the Vicodin once a day... doctor said to take AS NEEDED.... not regularly.

DH asked about putting a commode chair in her bedroom and transferring to it so there's no need to take the nighttime brace off. She wouldn't even consider the idea and insisted she can't walk with it... obviously not listening as he told her she can transfer and not have to walk. But the surgeon also told her on Thursday she doesn't need to wear that brace any more. So that's done. With that said - Friday night was the last time one of her sons stayed the night. There is no plan to stay again. New plan is to visit once a week later in the day on different days to help with whatever odd jobs need to be done. I'm sure her sister will also visit during the day some time.

She gets one more shower this week. After that, on her own. PT was twice a week and is now once a week. She has 2 or 3 more visits.

The tray for the walker has been a HUGE help for her independence. She can now carry things around the house. Especially food from the kitchen to the table.

The daily exercise chart was not used beyond the first couple of days. She insists she knows her exercises and no need to mark them off. I think she's not doing them completely. Even when she used the chart, she only marked it one time and she is supposed to be doing the exercises twice and walking for an hour total throughout the day.

We (DH, BIL, SIL, and I) are all so happy to be done with the overnights. It was a long 4 weeks.

MIL is still planning to be well enough to go back to work by February. However, needs to master the steps to get out of and back into her house. 3 of them. Also needs to be able to put the walker into her car and get herself into the car without it... and of course the obvious of being able to sustain a full day at work!