PLEASE HELP! My adult daughter was doing just fine until we moved to FL.
I’m a single parent caring for my child physically & she was on a perfect medication regimen-all needed-myriad reasons.
Her new assigned PCP-FL refused to call in meds she’s been on since 2015, abruptly.
It took forever to find the right combo of meds/vitamins in GA.
MEDS prevented & controlled anxiety, behavioral, & pain issues which are statistically known to occur with the TBI my child acquired,.
My child’s right knee was crushed as a front seat passenger in-fatal car wreck & had fused itself & is now contorted 40 degrees & sitting on nerves. Injuries to her right knee were missed at Neuro ICU-Savannah & a notorious Rehab. facility-Atl.-arrived via ambulance & still induced in Propofol coma.
My child worked hard to achieve her goals! She was now ready to learn to walk again!
Surgery to right foot & acquired drop foot needed repair to have full flexibility & walk with a normal gait.
During sedated CT at Emory, on foot for new images. Her right foot dislodged, turned 180 degrees, w/out any damage.
Surgery at Neuro ICU was to stabilize right foot to stay forward & be symmetrical to left foot.
Right knee was accidentally caught in above CT & showed the fused knee. It’s been causing severe pain (per nerve study test). My child couldn’t describe her pain, & this explained why she was combative during PT.
She’s in the 2% who can’t recall names of items, but knows what/how they are used. She was relearning @ a very rapid rate & beating the 2% she was in.
To my chagrin, a full knee replacement was needed. You can’t walk w/out your knees. She can’t learn to walk & will be in severe pain, until knee replacement/foot repaired.
Surgeries scheduled & approved via ins. carrier in GA. My child knew when she was mobile she would rehabilitate & beat TBI.
When PCP in FL refused to call in preventive meds & w/out titration, on 4-27-20, is when it all began.
Her thoughts, behavior, & pain are out of control.
On 5-5-20, my child destroyed her $40k bed, I paid for & I can’t replace it again & is a must have-now sleeping on a 2” mat on floor.
She’s now hallucinating, night terrors, migraines, atrophy, pressure ulcers, raw skin, cognitive abilities R confused & the time/hard work it took my child to achieve & she’s regressing fast & having the new issues develope.
I can’t describe the pain she’s enduring & in front of my eyes. My child knows, she’s not getting proper medical care/therapist she once had & needs, knows she must be fully mobile to get better. She doesn’t get why she’s not receiving medical care/surgeries she must have or why she’s sleeping on her bedroom floor.
She’s yelling cussing, throwing, hitting, & blaming me & asked if I’m trying to kill her?My child doesn’t know how to control these new issues she’s now having (neither do I). Asking why I’m letting this happen to her? Did I quit loving her? I’m going to die mama & I can’t die, I have 4 kids, & I now have to start over.
You know I have to walk, it’s the only way I can get better. You’re destroying me, my brain, & I hurt like ..!
She’s not aware how this is affecting me & how hard I’m trying to get her medical help & all she must have.
Original PCP in FL was great (replaced w/out my knowledge/request on 4-1-20).
1st PCP wrote 23 Orders & Referrals for her, PCP knew exactly what my child needed & didn’t alter her meds. PCP isn’t privy to new issues/needs, as new PCP was assigned.
Ins. carrier in FL denied all 23 O/R’s for nutritional supplements, durable medical equipment, ostomy supplies, CT/MRI’s, therapist, CNA’s, wound nurse, etc.
I don’t have a CNA, as my child’s new behavior is something I’ve never seen or had to deal with.
She’s transferred via Hoyer/sling & screams in pain. Her CM works for ins. carrier-NOT RIGHT.
My only other child, my Son-is preventIng us from living on street-THATS NOT RIGHT
Ins. is forcing me to place her in skilled nursing facility by denying all & that’s not happening.
Wishing you the best. Wishing I had a clue how to help. And hope others might have some suggestions. Mostly we are only a group involved with giving care to our elders, and familiar with some of what that involves. I think your problems may be beyond our knowledge and am sorry to tell you that.
The new PCP - I assume the change was instigated by the medical insurance carrier? Have you had a chance to contact them and advise them that the substitute isn't acceptable? Does your carrier have procedures for challenging the service it's providing?
It seems to me that there's a need for an orthopedic doctor as well as a neurologist for the TBI issues. If you have them, I would raise the issues with them; they might know of a PCP in the network who's more attentive and sympathetic than the current one, who frankly sounds like a jerk.
If this were Michigan, I'd suggest contacting the Rehab Institute of Michigan, which had a broad spectrum program for ortho and brain injuries. So I googled "TBI and physical Rehab Institutes" and found some that might be more suited to provide care for your daughter.
https://www.google.com/search?ei=GD9qX9i4DY6ltQbNn5fQBA&q=TBI%2C+and+physical+Rehab+Institute+of+Florida&oq=TBI%2C+and+physical+Rehab+Institute+of+Florida&gs_lcp=CgZwc3ktYWIQAzoICAAQCBAHEB46CAgAEAgQDRAeOgQIIRAKUNmMAVirqAFgxa4BaABwAHgAgAFziAG5DJIBBDE1LjOYAQCgAQGqAQdnd3Mtd2l6wAEB&sclient=psy-ab&ved=0ahUKEwjYpP2Jr_3rAhWOUs0KHc3PBUoQ4dUDCAw&uact=5#spf=1600798511723
Some of them apparently deal with TBIs, some with physical injuries. I don't know what your health plan provides, but I'm thinking that someone in one of these dedicated rehab institutes might be better to handle your daughter's care.
You're facing tremendous challenges; I do hope you find some assistance quickly. Best wishes, and good luck.
I can’t believe the other comment I read, about Florida Supreme Courts ruling re: lawyers and Medicaid. That’s the most absurd thing I’ve ever heard. Just wait until something happens to one of their family members. You never think it’s going to happen to you, but 7 secs is all it took. My daughter was in her baby making years, and missed Medicare by 1 week and 3 days. It was a mess as I had to learn all those those rules real fast. Her private insurance couldn’t support the level of care my child needed. But appalled at what the legal system can actually do. The scales of justice definitely aren’t even!! There’s corruption everywhere!!! The innocent are paying the price for it.
mince again thank you for taking the time and researching. I’ll look tomorrow, as I’ve just put my daughter to bed (actually on the mat), and I’m worn out. Tomorrow’s a new day, and please don’t think I’m any stronger than any mom would be. This is not a race it’s a marathon, and disgust me, when I hear how getting help is impossible for my child. She would be the one to beat medical science but must have the medical intervention to do so. Have a wonderful night!!!
it’s amazing they can’t recall saying what they said to me, until I forward them the email they had sent me.
Its a waste of time, as that isn’t productive for my daughter. All I know, I’m a very fortunate mom, to have raised my children with character and morals. I feel so guilty having my son who is the youngest of my 2 children, financially carrying us. Actually, that’s causes me so many sleepless nights and drives me crazy thinking about. But the home help I was told I would receive, so I could continue to work and support us, is the biggest joke.
But I’m tired of the medical doctors who took an oath to care for those who can’t care for themselves. They are supposed to preserve life, not make a very bad situation more difficult than it is. Thanks and have a wonderful evening