Tuesday, April 5, 2011

That Thing Called Sleep... Totally Overrated! (93)

It is 6 seconds until tomorrow morning and I am still awake. This is a pattern I am not enjoying. I am struggling to fall asleep before 1am these days. It isn't like I have things I am doing and I cannot get to sleep before I get things crossed of my list. I just simply cannot sleep. I lay here, listening to talks on my computer, music, movies, read, write letters, blog (like I am finding myself doing right now)...etc. Tonight I've tried the reading, talks and music. I even turned my lights back on to get a few things done (that is when you know I am really antsy and desperate!) and now, I am blogging. 
It's going to start out by me draining my thoughts out of the brain. Maybe that will help. If I bore you all to death with my random thoughts, maybe I will have nothing left to think about and I will fall asleep in seconds... and so will you from reading such a boring post!

Tonight we had some bad weather. Pretty decent thunder and lightning, heavy rain and wind and a spurt of some hail. Thankfully that was it. No tornadoes and it passed us rather quickly and we can sleep peacefully tonight... or blog peacefully tonight. ;) 

Maybe all of the rain and hail will have washed away some of the pollen that has found an unwelcome home in the area! Wishful thinking I am sure. I am having a really hard time determining if I have a cold or if this is allergies that I am experiencing. Pollen has never effected me this way that is why I am not set on that is what I am dealing with. I pray it is just a weird cold because it will pass fast. I am not sure what I will do if this is in fact allergies. I am going to have to call Mono's Dad to see what he suggests I take. I have tried what normally works for me and it has yet to show signs of being any help. We shall see. But here's to hoping our rainy evening is on my side, washing away a few inches layers of pollen!

I've been doing a lot of lunges to give my legs a hand. I stopped running when I was having some real hard times breathing and I got set on biking long miles and then I got sick (or allergies) and have not gone, but I have been loving lunges. Am I weird for that? But what I am questioning is, how many do I really have to do each day to notice any difference and when will I see a change? Even a slight one... I'm sore, but a good sore. :) I don't say that often. I say it after some good runs or rides, but since I haven't done either in a little while, it's good to feel the soreness again. If only I could get my breathing on track to get back into running again. Even if I can only run a mile at a time, I have to get back into doing it. 

Every night before bed I check out a website/blog that a friend updates each evening. I am going to post something here for you to read... 

A long time friend of our family is going through a very difficult time right now. Her daughter was in a tragic car accident last year and is on the long road of recovery right now. Patients with the severity of her injury do not get the help they need for the length of time needed. They are encouraging people to write to your Senators regarding this issue. I ask you to do the same. Please take a moment of your time to copy the following letter, fill in the name of your Senator, print it out, sign it and place it in an envelope to mail out. It will only take a few short minutes and one single stamp (per person), but it will mean the world to the Beattie family. Believe me when I say, they will be grateful. No matter if you choose to mail this letter or not, please, please keep Corey and her family in your prayers. If you would like to follow her recovery or know more about her, you can visit www.careforcorey.org or head over to www.carepages.com/carepages/coreybeattie and you will find nightly heartfelt messages and updates from Corey's sweet mom, Marie.

Thanks everyone!  ~ Mary Anne

Dear Senator __________________

We are writing on behalf of Corey Beattie. Corey - age 18, was in a tragic car accident October 2nd. She spent 3 weeks in the ICU Trauma Unit.

She suffered a broken neck at C1, fractured clavicle, pelvis and femur with the worst injury being a Global Brain injury. She survived two brain surgeries, implant of a VP shunt to drain the cervical fluid and a femur repair.

Within the first 3 weeks, Corey's eyes were open and she began to move reflexively. She was transferred to an acute inpatient Rehabilitation Hospital on the recommendation of the trauma team whose experience proved intensive inpatient rehab would offer Corey significant gains towards her recovery.

Since her arrival on October 22 she is now holding her head, sitting with assistance but gaining independent positioning, kicking her right leg, moving her left foot/toes, moving her arms and lifting her hips in a prone position. She has begun thumbs up/down, squeezing hands and hums for the initial forms of communication to command responses. She has begun showing signs of trying to formulate words as well as beginning to show emotion. Corey’s Neurosurgeon stated that he was surprised and impressed with her progress in just the last two months. She is showing more progress in 6 months than some of his patients with the same injury have shown in 2 years.

The issue we need to make public is that Corey’s Insurance is basing her length of stay on the FIM scale; Functional Improvement Measurement scale. A source of measurement that is unattainable for most levels of TBI survivors. In addition, her insurance plan with Blue Cross Personal Choice has NO CAP on acute care funding; however, because the Insurance Company is looking at a standard scale instead of Corey as an individual, her family is fighting for approval week to week. They want to deny further stay in a facility that is giving her the crucial stimulation that the first year of recovery requires! Their discharge is imminent!

Corey’s alternatives are grim. She has been denied by 20 nursing homes (65+) in her area because of her age and/or the facility not wanting to work with TBI patients. If she is approved for a nursing home, coverage is 120 days in a sub acute facility with the same FIM scale criteria and weekly approval measures. The insurance company maintains the power to decide sub acute care coverage as well. 120 days is not guaranteed.

The family’s alternative is to bring her home. Corey’s parents are divorced and they do not have family in the area for support. Neither parent can afford to become her full time caregiver. Insurance will not cover home care because Corey does not qualify based on their insurance's medical necessity criteria. Her brain injury and dependence on skilled care doesn't qualify as medically necessary as she only has a feeding tube.

Once Corey leaves the acute care setting, the coverage for therapy in a sub acute or for home care drops significantly from 3hrs/day 6 days a week to 2hrs/day 2-5 x per week based on her weekly evaluations.

Across the country, families and Medicaid are forced to supplement the patient’s needs. Medicaid funding is tenuous and doesn't cover everything. The State waivers are limited and/or capped for additional services. Grants are only awarded to patients 21 and older.
Her local school district can supplement services however, their budgets are limited and that is an additional ongoing fight for the family!

Insurance companies consider cognitive development experimental. They do not understand that cognitive stimulation coupled with therapy will assist these individuals to gain the skills necessary to qualify the use of the FIM scale. In addition, inpatient rehabilitation will result in the development of skills necessary for the patient to regain their ability to be integrated back into their community. Intensive inpatient rehabilitation in the long run will save the insurance company money. The sooner the patient is integrated and independent the less insurance will pay long term. To judge patients and deny coverage prematurely is condemning them to regression in their long term recovery.

Gabby Gifford is privileged to receive unlimited funding, therapy and resources. For the thousands of regular citizens across the country that do not hold a Senate seat they are tossed into the “Treatment Gap” that Steve Sternberg of USA Today so eloquently explained in his March 22nd article. The patient’s families are forced to quit or lose their jobs and financially risk bankruptcy to provide the therapy their loved one deserves because Insurance won't invest in them! THIS IS MORE TRAGIC THAN THE ACCIDENT!
Why should these individuals and their families be forced to accept the unacceptable? What a blessing for the Gifford's not to see the other side of rehabilitation.

No parent or family member wants to receive "That" phone call, but the travesty of fighting for care truly represents the most devastating fracture suffered by the victims and their family. This is the real story of what happens after the car is towed away or the shot is fired!
We are reaching out to ask for your help. How do we make this public and fight towards getting minimum 1 year mandatory inpatient rehabilitation for ALL TBI patients? This is not just Corey's issue; there are families across the country that are fighting just as hard for their loved ones. Perhaps Corey’s story will be the catalyst of change for everyone. It just takes one to make a difference!



Please help Corey and thousands of other victims across the county by creating a Bill to support Traumatic Brain Injury patient’s acute inpatient rehabilitation for the first year of recovery.

If you would like to contact Marie Beattie, Corey’s mother, please call her at 484-571-4778; or www.careforcorey.org
She will be able to give you the complete details of this young woman’s journey that is filled with nothing but obstacles.

Thank you for your consideration to this important issue.


Today's pictures are of Corey and my nightly routine reading her Mom's sweet messages on CarePages.com

Isn't she a beautiful young woman? So full of life, yet struggling on this long road of a new life. She was in a car accident on the Feast Day of the Guardian Angels. Do you think hers was with her? I surely do! Not only did Corey survive a tragic accident, but she is doing so much better than the doctors ever thought! Go Corey! You are in my daily prayers and thoughts! Sending love your way and hoping that the few people that may read my blog may be more added prayers to your recovery!

Well, now that I have some random and boring thoughts sprinkled out of the brain, I will try again to go to sleep. Jimmy is laying next to me...sound asleep...snoring! Oh, if only I got as much sleep as my little guy! Heck even half the amount he does! 

Good night again (but maybe not for good)!

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