I was sorting through old files and found this update on Brenna on the day the hospital dumped her into the Medicare ONE STAR RATED nursing home. Medicare needs a rating system that indicates NO STARS. This was dated June 7, 2010. It took me until June 23, 2010 to gain temporary custody so I could get her out of this place.

If anyone else made a move like this, they would get charged with kidnapping. If anyone else pushed me to sign a promisory note on my house before being allowed to see my daughter, wouldn't it would be called extortion? Seems to me that forcing a family member to sign over the house is the same as forcing them to pay a ransom. Hmmm. THAT is a point to ponder. How come the medical profession gets by with this???

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June 7, 2010

Please keep praying. This has been a strenuous day. My good friend and cousin, Mary, has been so good to be here with me the last two days.

Without fanfare or advanced warning, the hospital dismissed Brenna and transferred her to the “skilled care” nursing home in Nampa. From what nursing staff at the hospital had said last night, Brenna was expected to be in the hospital at least until Wednesday or Thursday. I ran home this morning to take care of the girls and when I got back, the transportation was on the way to transfer her. No time to explain to Brenna what was happening. If I hadn’t returned when I did, she would have been moved without my being there to help her with the transition.

The financial manager was irritated that I contacted a lawyer for Brenna’s benefit. She said SHE could do whatever was necessary without my putting out money for a lawyer.  She let me know that SHE pulled the plug on HER daughter because of “quality of life” issues (in her opinion). She told me I could not touch Brenna, could not help her with her physical therapy. She told me to GO HOME and let them do their job. No Way. This journey is one I walk with Brenna and I will not leave her in the hands of strangers.

When I got to the room, Brenna was petrified. It took me awhile to convince her that she wasn’t going to be left there alone. I found the stethoscope on the floor, the stethoscope that was to be used for Brenna. No one entering the room, even the doctor, washed their hands before checking on Brenna. The doctor did write an order for me to be able to do the PT the hospital taught me, even though he said it was too early to be concerned.

I told the hospital this was warehousing patients. I am more convinced every moment that is exactly what is happening here. I doubt any real effort will be made by the staff to rehabilitate her.  So far, from what I have seen, they aren’t trained to talk to patients in Brenna’s condition as if they are people. They checked her blood glucose count without telling her first. She is just an object. I told them to call her by name and to be sure and tell her the day and time in military time.

The company that owns this “vent” wing contracts for space with the owners of this Medicare rated ONE STAR “skilled” nursing facility. The TV is high on the wall and the old woman in the next bed has control of the blaring TV. The ventilator is so noisy, it roars in Brenna’s ears. I can barely hear myself think, so I know what it must be doing for her!

This place is NOT conducive to rehabilitation for a young person. Everyone else is over 65.  As of 9:15 tonight, no one from PT had been in to do anything with her. It breaks my heart that this is the only place in Idaho that will take her.  [That is what the case manager at the hospital told me. After getting Brenna out of this facility, I learned that two LTACs could have taken her but both told me they had not been contacted.]

Please pray that Brenna will get the treatment she needs. I am so frightened that she will get nothing here.

Pam

Hi

I worked with Brenna to teach her to say "hi". She tried so hard. I was always so proud of the effort she gave to succeed in her therapies.

Health Care

I posted this message on a newspaper blog. I thought I would share it here, otherwise, it will get lost in cyberspace.

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For those who have not read the plan (Affordable Care Plan), it can be found at: http://www.govtrack.us/congress/bills/111/hr3590/text. It is 1000 pages but it is searchable if you copy the Plan into a Word document where you can search for specific sections. You might find that the scarey monsters we have been told to fear the most just aren't there.

The Plan provides for supplemental health insurance for the disabled under 65, which the state of Idaho does not provide. My 28 year old daughter passed away in October. This alone would have been beneficial for her. And if Idaho had this provision, I would have made SURE she had it, no matter what else I would have done without. She was that important to me.

You see, she was a brittle Type I diabetic since she was 6. She had no health care coverage for years. She could not get on Medicaid because she was not pregnant, a single mom, or just out of jail. For Medicaid, she had to suffer a medically unexplained brain anoxic injury.

She couldn't get health insurance either because of her diabetes. I bought her diabetic supplies out of Canada because I could get them for about 1/2 the cost of the USA.

It took us 37 months to get her on SSD to get medical help with her diabetes. We had to prove she was diabetic. Yet, had she been "directionally challenged" or "couldn't stand crowds", she would have been accepted in less than six months.

And even once she got on Medicare, the better doctors wouldn't see her. They wanted insurance. One doctor told me he didn't have to take care of people "like her". Shame on him!

Search the Plan and you won't find the dreaded IRS enforcement clause. You won't find death panels. You see, those already exist. They started calling them "bioethics" committees 30 years ago and they began under the beloved Reagan years.

The Plan has many good things, but for those who refuse to read it, please do not accept the free annual physicals. No one is forcing you to. Please do not put your children under the age of 26 on your insurance. No one is forcing you to. But, those are really good ideas. I support them, just as I support this Plan for all of us.

If you want to read the good news of where many of the ideas for this plan originated, then read the 1990 Pepper Commission report. Available: http://www.allhealth.org/publications/Uninsured/Pepper_Commission_Final_Report_Executive_Summary_72.pdf

I saw health care from the underbelly side in the months of my daughter's illness. The system has been broken for years and we keep wanting to keep the blinders on. Many in society must like being led around by the mentally blind because they refuse to educate themselves.

Read more: http://magicvalley.com/news/opinion/mailbag/letter-to-the-editor-supreme-court-should-uphold-reform/article_f1946ed8-7895-11e1-815d-001871e3ce6c.html?mode=comments#ixzz1qUNfvfMq

Invading personal space

None of us like to have our space invaded. Yet since the loss of My Brenna, I find myself having to do just that, invade the space that once was hers. It is so hard to do. At times I feel guilty. Other times, like today, I feel a great depth of sadness creep over me. It doesn't help that it is raining hard and has been all night. The skies are grey and sort of fit my mood today.

It was different after my husband died. We had been married almost 28 years. I opened his closet and drawers all the time. I knew what was in his shop. I knew what was in his tackle box. When you are married, you really don't have a lot of "space" to call your own. Eventually cleaning out his closet and drawers only brought me one big surprise, actually a shocker, but I'll deal with that in another blog, if I decide to reveal what my beloved husband, tired of being ill for so long, had hidden on the top shelf of his closet.

This morning I was sorting again and ran across Brenna's collection of silver dollars. Value? The six that were made in the 1880s have a low value of $15 each. I give them the low value because they ARE used and I didn't want to presume they might be worth the higher values. There are seven more made in the 1920s with a low value of $15 each. The stack of Eisenhower dollors are only worth $1.25 each and the Sakajawea and Susan B. Anthony dollors are only worth face value.

These are Brenna's. I have no use for them but here I sit, wondering what to do with them now. I feel like a thief even thinking about it. I have invaded her space. She was saving them because they are a piece of American history, not because of their value. She liked saving things like that.

For now, I will probably put them back in their box. Meanwhile, I will toss around an idea that is in the back of my head. Something I think Brenna would want me to do.

When you read Condemned to Die: Ask me how. Tell me why, you will understand Brenna's tipping policy and why I think the idea in my head is what she would really want me to do with them.

She really did teach me more than I ever taught her.

Internal Revenue Service Enforcement-Not in PPACA

I did a search of the PPACA and could not find a reference to the Internal Revenue Service as an arm of enforcement. Maybe I just haven't stumbled on that yet but a search for Internal Revenue Service does not pop up with anything.

What I have found are multiple references made to the Internal Revenue Code as it applies to setting criteria to specific programs.

This doesn't mean the IRS is going to come after everyone with a big stick. What this does, from what I can see, is makes sure the Plan is compatible with language already written into Medicare, Medicaid, and health insurance laws.

The government uses 380,446 words to define this Plan. I think we can all be forgiven for not understanding it. However, that does not preclude anyone who is capable of using the Internet from becoming informed in the first person sense.

While we have all complained about members of Congress not reading this bill in its entirety before a vote, I think we can safely assume that those who voted against the bill did not read it either. Contrary to what we all believe is happening in DC, none of the elected officials have time to read every bill. There just aren't enough hours in the day.

Because running for Congress is an expensive project, once elected, they spend the majority of their time hunting for money to get re-elected. This deeply cuts into any time they have for even a cursory look at something so critical as the PPACA.

I urge everyone with a computer to download or copy/paste this bill into your system and, rather than go by what someone else says, including me, search if for yourself.

When I think of this Plan, I am reminded of my father who used to say, "I don't care what THEY say. What THEY say doesn't count. Find the truth."

The truth of this Plan doesn't lie only on either side. There are many good sections in this bill that would help a disabled young person like Brenna, possibly helping them live with hope and dignity. As a nation, we need to keep the good sections that protect the health care rights of the vulnerable. For those things that are unacceptable to us as a society, we should remove them, revamp them, or toss those sections out. But not the entire Plan.

That is my soap box for the day. Blessings to all who had the patience to read this far.

Patient Protection Affordable Care Act

Let's talk about sections in the Patient Protection Affordable Care Act (PPACA). I hear so many misrepresentations about what the plan will do and not do. I have the plan in PDF format and in Word on my hard drive. Both are searchable. I refuse to call this health care by Obamacare. If we are going to address this bill, let's call it by its proper name. To access the Plan, you can find it at

http://www.govtrack.us/congress/bills/111/hr3590/text.

Today as I was reading through the Plan, particularly because someone said that in the Plan, health care for people over 55 will be denied and you will be allowed to die. This lady had a cousin who is a nurse and her cousin had read that in the Plan. I wondered if this was a cousin to another lady who had another complaint a few weeks ago that claimed the Plan told the doctors what age patients they could accept...That particular office did not accept pediatric or geriatric cases. The nurse cousin said, "It's in the Plan." As I researched the Plan, neither of their concerns are even IN the Plan. Seems everyone has a cousin who is a nurse who read the bill but haven't accessed it for themselves. Or they have a preacher who knew someone that heard something at a meeting from someone else who may have seen the Plan fly by on the Internet. Sort of like the old children's game of Gossip. The original truth is buried in whatever people think they heard.

From my observations, people are taking sections out of context in the Plan just as they do in the Bible and turn it to suit whatever fear mongering factor they want it to say.

When reading a section, you have to start at the beginning of the section and work down. You have to read the other sections mentioned.

Nowhere did I find anything that referred to patients over the age of 55 not getting treatment. What I did find are specific references protecting patients' from being discriminated against by insurance and health care providers based on disability, health/mental status, and other factors.

The second lady with a nurse cousin said her cousin's office couldn't treat anyone under the age of 19 and over the age of 60. Guess who she blamed for that? President Obama. I have been unable to find that in the PPACA, too. What I do know from experience is that doctors purchase their medical malpractice insurance based on the type of practice the doctor/practice wishes to provide. The type of medical malpractice insurance the medical practice purchases has nothing to do with the PPCAC.

Brenna and I had read the Plan together. Reading the Plan is like reading the Bible every day. Each time you read it, you learn something new and receive clarification.

The meeting before the Idaho House of Representatives State Affairs Committee this morning was successful. They passed Senate Bill 1348 with full recommendation to the House for a "DO PASS" vote. This bill clears up language in previous statutes and allows family members to have priority say in the care of patients where there is a conflict of opinion between the patient/family and the doctor in cases where the medical staff deems the patient to have "no quality" of life.

And as usual, I did not stick to script. I had printed off an 8X10 of Brenna sitting on the side of her bed at 7 weeks past her brain injury. I told them this was the young lady who had been pronounced in a "persistent vegetative state", 7 weeks later. That got their attention. I told them about the refusal of hospital staff to even tell Brenna that her Mama was there for her in the ER and that the CCU doctor told me she would treat Brenna her way no matter what I found in research.

I made sure they understood that she received no treatment in the first hospital for swelling in the brain. I made sure they understood that because Brenna had a brain injury, she was denied dental care for 4 1/2 months, until she had 5 broken teeth and the rest were splintered. I had their attention.

I brought them home with Brenna after 15 1/2 months of a hellish nightmare in the health care system as it exists today, her final heart attack that put her in the hospital, and then to her last trip home where her Mama held her one more time and this time, let her go.

I left them with these words. "I said to my daughter, 'Mama loves you and in the blink of God's eye, Mom will be there with you.' On Brenna's behalf, please pass this bill out of committee."

Things to Ponder

Just a few questions to think about before I go to bed.

Isn't it strange that it would be "cruel and unusual punishment" to starve to death a prisoner on death row, yet starving to death a person who has a brain injury is "humane"? Strange indeed! I didn't see anyone protesting at the hospital doors when doctors were trying to convince me to starve Brenna to death. Yet they lined up on the Capital steps on a death penaly case for a man who killed three people. Strange sense of values!

Christians sing, "What a day that will be, when my Jesus I shall see, When I look upon his face, the one who saved me by his grace." This brings to mind the question:

If Christians are so happy at the thought of going to Heaven, then why are we spending so much time and money with doctors, delaying the journey?

I keep getting told that Brenna is in a better place. I KNOW she is. I GET it. Every family who walks this journey knows the suffering is over. My question to all those who think they need to keep reminding me: Since you believe Brenna is in a better place and it is where you say you are headed, then why do you get so mad when an older person doesn't get on the organ transplant list?

Just thinking!

An additional paragraph for Monday

As I was wrapping up the presentation for Monday morning, I thought of the third hospital who refused care for Brenna. This is the paragraph I have added to the speech just before the paragraph that begins "For 15 1/2 months".

After rescuing Brenna from this nursing home, she spent time in another hospital. There I discovered she had teeth broken at the gum line. I begged for a dentist for her. I was totally ignored and Brenna was allowed to suffer. 4 ½ months before she had to have all her teeth removed, 5 teeth broken, the rest were splintered.

Idaho State House State Affairs Committee March 26, 2012

This is the speech I will give on March 26, 2012 at 08:30 in the Idaho State House of Representatives State Affairs Committee on behalf of Brenna.

Ladies and Gentleman of the Committee,

Thank you for this opportunity to speak on behalf of Senate Bill 1348.

My name is Pamela Dowd, Boise, Idaho. I want to talk about two hospitals with two different attitudes.

I speak today on behalf of my only child, my daughter, Brenna Dowd. She was 27 years old when she suffered a medically unexplained hypoxic brain injury following a retina repair surgery.

On May 26, 2010 at 3 AM, my daughter and I held our last normal conversation. When I went to awaken her for her post-op appointment six hours later, she was breathing but unresponsive.

She was transported to a regional hospital. I was escorted to a darkened pediatric waiting room. Over an hour passed before the ER doctor came to give me an update. That was the first time I gave a request that was denied. I wanted Brenna to know her mother was present. He said it would do no good. I wanted to be at her side. The request was denied.

When she was transferred from ER to CCU, I saw abject terror on her face. The negative talk around her bed scared her. While physicians felt she “couldn’t understand”, she did. She felt their negativity. During the following days, I was repeatedly approached to end her life, starve her to death. She was not brain dead. Her EEG was “pretty good” according to the first neurologist. He said her brain stem was healthy. The second neurologist said it was too early to assess brain damage and know the difference between damage and swelling.

I began researching treatment and rehabilitation. Whenever I spoke with the CCU doctor in charge, her response was: “No matter what you suggest, I will not change my way of treating her." When I asked for my daughter’s own doctors to come, her response was: “There is nothing they can do that we can’t do. Her doctors can only come if I request it.”  When I asked that Brenna’s brain be protected from swelling, the CCU doctor informed me that Brenna did not have the right kind of injury to cause swelling in the brain. This was a statement in direct contradiction to the second neurologist. And the pressure to end my daughter’s life continued.

Then, without my permission and against my direct request not to do so, my daughter was suddenly dumped into a Medicare rated one star nursing home, miles from home.

Fast forward 16 months.

On September 26, 2011, while a relative stayed at home with Brenna  while I went for supplies, Brenna suffered a sudden cardiac arrest.

This time, Brenna was transferred to the hospital of my choice. This time the experience was different. A hospital chaplain came to be with me. When she began to talk to me in what I called “hospice jargon”, I asked her not to use that terminology. She respected my request and stayed by my side most of the next few days.

I was allowed total access to my daughter in ER. I did not leave her side and no one suggested that I do so.

In ICU, Brenna was placed in a medically induced coma with Theurapeutic Hypothermia. This therapy reduces swelling in the brain and protects the brain from secondary injury. When she began having seizures, the doctor ordered more testing.

At all times, my daughter was treated with respect and dignity. I requested that any discussion of the results of her tests be kept out of her room. That request was honored.

When all tests results were in, I knew that this time, my daughter was not going to recover. There would be no rehabilitation.

I asked to take her home. While there was no protocol at that time to take a dying patient home, the staff worked to make it possible.

On October 1, 2011, my daughter came home. We settled her comfortably in her bed and removed her life support. I cuddled my daughter in my arms one last time and this time, I let her go. I said, "Always and ever your Mama loves you. Join hands with Jesus, that's what you must do, and in the blink of God's eye, Mom will be there with you."

The difference in the two hospitals is simple: In the first hospital, they treated a living patient as if she should die. In the second hospital, they treated a dying patient with hope as if she would live.

I can’t help but wonder how much better Brenna’s chances would have been had she received at the first hospital the same level of care she received at the second.

Today is the 26^th, six months since Brenna’s SCA.

On Brenna’s behalf, I urge you to give this bill serious consideration and pass it from Committee.

Thank you.

PVS—Death by Starvation

This is my opinion of what happens with the diagnosis of PVS with the insistence of death by starvation. I do not expect most doctors to agree with me. I was with Brenna. I know what I saw. I know what she experienced. I was with her over 6000 hours in 16 months.

The second anniversary of my precious Brenna’s anoxic brain injury (AKA, acquired brain injury, ABI) is quickly approaching. My heart grieves for the state our medical profession has become. You know: The state where in ERs, ICUs, and CCUs, where a patient with a brain injury quickly becomes a budget issue? Heart and conscious goes out the window.

Those who SHOULD know better strongly promote death by starvation. They don’t call it that. They call it letting go. When the brain is not dead, I have another word for what they encourage…MURDER.

Take a look at this article. The “specialists” call the experience “serene”. Are they kidding??? No, they are very serious.

http://abcnews.go.com/Health/Schiavo/story?id=531907&page=1

If starvation is such a wonderful experience, then please explain why society isn’t rejoicing over the thousands of people starving across the land. Why do we seek to feed the hungry? The answer: because starvation is NOT serene. Letting people die by starvation is NOT humane. Not in Third world countries, not among American poor, and not in American hospitals. What a horror these doctors put into the minds of the survivors of patients with an ABI!

“Family members and friends are often surprised to find that a terminal patient's eyes will open and they will appear to glance around the room.” My daughter opened her eyes. My daughter looked around. Surprised? I wasn’t. Brenna knew her mother was present and she knew the professionals wanted her to die. SHE WASN’T DEAD. The expression of abject terror showed on her face.

PVS—Permanent Vegetative State—poorly and inadequately diagnosed by professionals who believe MD stands for Medical Divinity. The British Journal of Medicine published a study in 1996 that says at least 40% of patients diagnosed with PVS are MISDIAGNOSED and can be rehabilitated. Why has the USA ignored this study? Why are there NO NEW studies on brain rehabilitation for patients suffering with acquired brain injury?

I carried in my purse the DX of PVS for Brenna for a long time. A PVS by a pulmonologist who NEVER saw Brenna, and one who when called by the hospital ER doctor about Brenna’s skin condition and infections around the PEG and trach, said, “I didn’t know it was that bad.” He didn’t know because he had never seen her and his diagnoses of her daily condition was based solely on LPNs who certainly have no training in brain injuries and the only answer they had for anything else was an antibiotic.

Who are these experts making these end-of-life decisions? Pulmonologists and general surgeons in Brenna’s case. The first neurologist assured me she was NOT brain dead. The second said it was too early to make a determination of the extent of brain damage.

Here is how I observed diagnosing of PVS.

     Pinch the finger. Pinch the toes. Scream in the face. No  
     reaction? Out they go. Next patient please.

Un-Care by Nursing Staff and Aides

My opinions are based on conclusions of over 6000 hours and 16 months of observation of care in three nursing homes and four hospitals with the care of my daughter who suffered a medically unexplained anoxic brain injury on May 26, 2010, following a retina repair surgery. These comments are only the tip of the ice berg.

Have you ever been a patient in a hospital or nursing home, totally dependent upon staff members to turn your body on schedule? If you haven’t, you are in for a non-treat.

Here is the way patient care goes in many hospitals and nursing homes.

Repositioning is SUPPOSED to be every two hours at least.

Reality: Whenever staff chooses to make the turn. That may be 4-6 hours, no matter how it is documented.

Patients are SUPPOSED to be placed in a comfortable position.

Reality: Patients are frequently left for long periods in positions with their heads and knees against the railings.

Patients who cannot use the call button are SUPPOSED to have a soft-touch call button, placed under their arm so that any unusual movement will call for help.

Reality: Patients do not get a soft-touch call button. And if there IS a soft-touch, the call button may be placed out of reach, not under the arm.

Patients, according to the CDC are not SUPPOSED to be on a catheter long-term. Catheters are the greatest cause of hospital acquired infections.

Reality:  Facilities use catheters long-term because it is easier on the staff. I call this the lazy staff syndrome, acceptable in most facilities.

Patients who are no longer on a catheter are SUPPOSED to be under CHECK AND CHANGE guidelines, and checked for changing at least every two hours.

Reality: Not so. Staff likes to huddle around the unit desk and chat about last night’s junk-watching reality show better than take care of the reality of patient care down the hall. If a patient is so unfortunate enough to soil their clothes immediately after being changed, hear the staff complain.

Patients who cannot take care of themselves need an extra-wide hospital bed for extra room when being repositioned.

 Reality: Few facilities care about this special need.

Patients receive two showers per week.

Reality: Not if you are not mobile. If you cannot take care of yourself, showers are few and far between, no matter WHAT gets documented. Brenna went 10 weeks in an LTAC without a shower, in spite of the extra large bathroom attached to her room. In the last nursing home, she went 14-18 days between showers. Sorry, being wiped down with baby wipes is NOT a shower.

Patients are well-loved by all staff members.

 Reality: Patients are a return on investment and investors have little concern about the care patients receive. As long as facility managers receive a bonus for cutting corners, patient care will continue to decrease.

All staff is educated on how to recognize when a patient is in trouble and call for help. According to admittance staff, even the janitors know what to do.

Reality: Many aides are not trained to recognize when the patient bed is at the wrong angle for a feeding tube or how to handle a patient with a catheter. Most staff doesn’t have a clue how to take care of a trach, and that includes facilities that provide an RT. Brenna was left many times at an angle low enough to cause her to aspirate formula into her lungs. I had to frequently tighten her trach collar so the cannula would not rub her throat. I watched two charge nurses jerk Brenna up in bed once, pulling on the catheter.  And janitors certainly do not know what to do.

Medical records are kept up-to-date and are accurate.

Reality: From my observation, medical records indicate what should have happened, not what actually did happen. Apparently state inspectors are not equipped enough to see that the handwriting is the same for multiple nurses on different shifts.

Staffing is supposed to be adequate to take care of all patients.

Reality: Staffing is not based on acuity of care. No matter how many critical cases a unit may have, investor owned facilities cut back on care; leaving patients cared for by over-burdened staff with too many patients

Love never dies

My heart bleeds when people suggest that I move on, that I reach out to new things that do not remind me of my beloved Brenna. I want to remember her, the dreams we shared, the trips we took, the goals she had, every moment of those last 16 months where I was at her side every moment I could be there. I do not want to ever forget the precious person she was. For those who believe I should just "move on", they did not know my Brenna. They do not know me.

When a person dies, where does love go? When a person dies, does love die, too? Love stays in the heart. Love is real. Love does not die.

From the first moment I knew Brenna was going to be born, I loved her. I did not know if the baby would be a girl or boy. It did not matter to me. I knew that no matter what, I loved the baby before birth.

When the social worker handed that precious little bundle to me and I uncovered her sweet little face, my heart turned cartwheels and I fell head over heels in love with her, my precious gift from God.

Her little turned up  nose and her rosebud lips and her sparkling eyes that could blaze with emotions, touched my life all the days of her life.

I loved her before she was born. I loved her when I first saw her. I loved her all of her life.

And when she died on October 1, 2011, LOVE DID NOT DIE. I will love her forever. Present tense.

Each night as I left her room at the nursing home I said, "Brenna, I love you forever. Forever I do. Always and ever, Your mama loves you."

Child of my heart, the joy of my soul, in the blink of God's eye, Mom will be there with you.

Let's Talk Quotas

Let's Talk Quotas

How about rehabilitation quotas for patients who suffer an anoxic brain injury??? Don't think they exist? Think again.

I had it from a good authority, a representative of a large hospital who advertises as a brain rehabilitation center, that these quotas not only exist, but that they are actively working in Congress to get that quota reduced from 35% of their brain injury load to...whatever percentage they can get. She admitted to me that ideally, they don't want to take care of patients with anoxic brain injury AT ALL. She said they were too expensive and too time consuming. I told her I would meet them in DC. I guess she thought I was just an overtired, frumpy mom so what could I do or say when she revealed this information to me. She was wrong. My only child died 35 days later of a sudden cardiac arrest. I have nothing left to do BUT go to DC and become the old lady in the halls.

After discussing this 35% quota with a brain injury case manager a few days after meeting with this hospital representative, I learned that this quota is an inside secret. He said, "I am sure this is an inside secret the hospitals didn't want anyone to know."

What this translates to is a reduction in available beds for any patient who suffers a brain injury for anything else but TBI (traumatic brain injury). If these hospitals get their way, patients with an anoxic/hypoxic brain injury will be shuffled off faster to an ill-equipped nursing home than you can say "Snow White".

The government knows the problems exist. TWENTY YEARS AGO, the FBI investigated a large corporate brain rehabilitation chain. According to research from the Church of Scientology, part of the investigation included quotas. I have no connection to their church but did feel that this article has merit in reading.

I found the quota mentioned on their site, then searched for more news. One paragraph stood out.

http://copyrights.freedommag.org/page06.htm

New Medico, covered in a congressional report entitled "Fraud and Abuse in the Head Injury Rehabilitation Industry," included, "inappropriate care, fraudulent billings, misleading marketing practices and the use of non-skilled workers." Other allegations included "unethical recruitment of patients, virtually non-existent medical treatment, falsifying treatment records to show improvement to families, referral fees paid to hospital personnel and patient quota."

Other links I have found so far.

http://www.nytimes.com/1992/03/16/us/treating-of-severe-brain-injuries-is-profitable-but-not-for-patients.html?pagewanted=all&src=pm

Treating of Severe Brain Injuries Is Profitable, but Not for PatientsBy PETER KERR
Published: March 16, 1992 

http://www.nytimes.com/1992/10/28/business/company-news-fbi-seizes-records-of-new-medico.html

COMPANY NEWS; F.B.I. Seizes Records of New MedicoBy PETER KERR
Published: October 28, 1992

http://www.highbeam.com/doc/1P2-8240084.html
John H. Kennedy, Globe Staff

New Medico sells its last 3 facilitiesBy John H. Kennedy
Published: August 9, 1993

Normal?

Families who face a crisis with a loved one who suffers a brain injury have to contend with medical professionals who continually fluff off family observations as if they were nothing.

Who knows and understands the patient? Who knows every little nuance of the patient's personality? Not medical professionals who see only brief glimpses of the patient! Not medical professionals who know that if they acknowledge the little things families see that their work is going to get harder! Not medical professionals who may have years before served a one-month round on the neurology floor of the hosptial! Not medical professionals who haven't trained on any level to be a brain injury rehabilitation specialist! Certainly not medical professionals who base their ill-informed decisions on out-of-date studies!

Who best knows the patient? FAMILY.

Family observations trump medical professionals every time.
Or it should.

BTW: When it comes to brain rehabilitation, there haven't been any new peer-reviewed, published studies in the last 25 years. Insurance companies can't find them to make their policies on treatment. If insurance companies can't find them with all their money, then how can we, the family  members find them.

Questions for the Day

Questions for the day regarding brain injuries

Why are families not informed about the availability of Therapeutic Hypothermia to decrease swelling in the brain and prevent further damage?

Why are patients not transferred to the nearest hospital where Therapeutic Hypothermia is available?

When does ending life become murder?

When signing papers to let a patient die, what percentage of brain damage crosses the line between letting go and committing murder?

Why do life insurance companies pay on policies when a patient is not determined to be brain dead?

When does pushing families to end life become conspiracy to commit murder?

Why do hospitals not give families of patients with an acquired brain injury (ABI) fully informed information about resources in the community for brain injury rehabilitation?

Why are families not informed by hospital staff about the existence of brain injury certified case manager to help families make decisions regarding rehabilitation and recovery?

When does dumping patients into sub-standard nursing homes against family wishes become kidnapping?

When does forcing non-custodial family members to sign financial papers for admittance in nursing homes, when the patient was dumped there by uncaring hospitals, become extortion?

Why do brain injury rehabilitation hospitals gain millions of federal dollars each year have the right to deny ABIs rehabilitation based on some hidden quota of 35%?

When does withholding rehabilitation for patients with an acquired brain injury become morally reprehensible enough to society to demand change?

Is this it?

As I was writing the final chapter in Brenna's book, the one of her last moments on this earth, I couldn't help but think, "Is this all I have to do, Lord? Can I come home now?"

Then I felt a gentle touch on my knee. Gibbs, Brenna's little Min-Pin,  placed his little foot on my knee with his face pressed close to me. He looked at me as if to say, "Grammie, Little Mommie left you to me. You can't go now."

I know the book cannot be the end. God still has a plan for Brenna's message.

Jeremiah 29: 11

This is one of Brenna's favorite Bible verses and was on one of her favorite sweat shirts. This verse was also one of the verses in our daily devotions on January 1, 2011.

Jeremiah 29:11

11 For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.

As I was cleaning out a box, sorting, packing, and tossing, I found these notes, dated January 1, 2011.

These thoughts are my reflections on prayer and how Christians, me included, have approached prayer in our daily lives. If you use these thoughts, please remember where you read them.

*****

"Thy will be done" has true meaning when we have a personal investment in the outcome.

Too many times Christians pray, but not only put God in the box, they sit on the box so he cannot get out of the box to do His will.

What do Christians do best?    Pray
What do Christians do least?   Act on prayers as God's hands and feet.

Pray believing in God's ability to perform miracles.
Pray expecting God's blessing.

"Thy will be done"  has true meaning when we let God out of the box and stop telling him how to fix problems.

Miracles happen when Christians

let God out of the box.

Idaho Senate Bill 1348

Idaho Senate Bill 1348

I just spoke to Idaho State Senator Nuxoll. For anyone in Idaho, please encourage your state senators to support this bill. This is a first step. It is vital. 

For those who do not live in Idaho, please check your states to see if a similar bill exists.

Thank you.

Senator Sheryl Nuxoll of Idaho State Senate has sponsored a bill that would require physicians and nurses to give a patient treatment at the family's request even if the patient is dying. I called her office and left a message for her. Her bill is important but it is only the tip of the ice berg.

From my observation, many of the staff members in hospitals do not have the qualifications to determine if the patient is near death. They "assume". When Brenna was first diagnosed with an anoxic brain injury, there were no peer reviewed published studies on brain injury rehabilitation and hadn't been for 25 years. That doesn't come from just my observations. Blue Cross of Idaho, when I stumbled onto their site for criteria for brain injury rehabilitation, couldn't find any studies in 25 years either. The lack of current studies seriously affects the treatment patients with an anoxic brain injury receives.

From my observation about Brenna's treatment when she had her initial brain injury, the first hospital did not have the advanced equipment needed to protect her brain from further damage and that would restore her cognitive levels. I didn't know something more COULD be done until I found an online brain injury support group much later. I didn't know the right equipment existed to help Brenna more.

But, that hospital had to have known. Shame on them! Four miles away, in the other hospital, the equipment existed and NO ONE informed me. NO ONE. All they did was target my daughter for death and, I believe, for the organ donor market.

I spent hours being haunted by Dr. Ghoul as he pressured me to let my daughter go. LET HER GO???  She had 50% of her brain left and the 2nd neurologist told me it was far to early to determine how much was damage and what was swelling. The 1st neurologist assured me repeatedly that Brenna WAS NOT BRAIN DEAD and that her EEG was "pretty good". I honestly believe that what Dr. Ghoul promoted was outright murder.

Did I listen to him? NEVER one moment. I had no clue who he was. He just appeared and started the pressure. He popped up at odd moments, just like a ghoul. I began to notice him circling the CCU on rounds with other doctors. He reminded me of a vulture, looking for prey. My daughter was not his prey.

Get this. He comes uninvited and charges Medicare $455 for his unwanted services. It is like the town tramp showing up at your house, ordering pizza with all the trimmings, and charging you for the meal.

We can shave off at least some of the money paid out by Medicare, Medicaid, and insurance companies by dispensing with these uninvited services. If hospitals want to encourage death by starvation, let them pay for the "services" out of some other fund, perhaps out of executive staff bonuses.

Condemned to Die is DONE barring more changes from the editorial department. I sent in all the photos to be included. That was difficult...choosing which pictures to add. I want people to see how well she responded to therapies. I wish there had been a way to add more but the publisher limits the numbers of photos.

I wish there had been a way to include all the changes I saw over those 16 months of her fight for recovery. Perhaps through the blog, I can tell "the rest of the story".

It is heart breaking what happens to patients suffering from a brain injury. It is bad enough to be in one for any reason. But a patient with a brain injury has no one to speak for them. They are frequently the last to receive care. They are more frequently the first to be medicated. They are more frequently shuffled from one facility to another, just like a box going down a conveyor belt.

Brenna only had one way to communicate. She had a loud noise I called her "baby elephant" sound. The only time she made that sound was when she was uncomfortable or needed to be changed. Too often facilities gave her Valium instead of doing their job of keeping her clean. THAT is how she got sore. I bought Desitin for her and I had a battle getting everyone to use it. They preferred to use their own stuff that was nothing more than petroleum jelly with a few additives...nothing healing. They didn't always clean her well, then wondered why she got sore.

I put up signs on the wall: Desitin Always. Some staff chose to ignore and do things their way, ways that caused Brenna to get sores in her perineal area. Who in their right minds would want to be sore in their privates? Yet, they do it to patients. There were times when I felt like any nurse who refused to take care of Brenna right should have their own rears sandpapered and just use petroleum jelly on them...whenever I felt like cleaning them at all.

One day I got sick of Brenna being ignored. The facilities wouldn't let me take care of her. I went to the Dir of Nursing and told her that if she allowed a particular nurse to be near Brenna again, I would file charges and prosecute. In the last nursing home, I called the Dir of Nursing and told him to keep one of his aides away from Brenna. She was lazy, never doing a good job of cleaning, and when I asked her to change Brenna, she fluffed me off with excuses and told me Brenna would have to wait. She had spent the previous hour and a half sitting in their little office chatting. That was when I called the DoN and told him to get down there ASAP. Did they get rid of her? No. They reassigned her. I heard other aides complaining about her laziness but their concerns were ignored, too. Lazy too often keeps jobs in nursing homes. I have seen it over and over and over.

Once I got Brenna off of the institutional conveyor belt and at home for 8 days before her SCA, I never heard the sound again.

I had placed her bed in the family room where I could see her from the kitchen or living room. Even from the bathroon, I was just a few steps away. For the first time in months, I could relax. So could she. She smiled a lot during those 8 days. She was home, a familiar place, with her dogs, her stuff, and her mom.

Her bodily functions leveled out. She got the proper amount of water. (One facility cut her down on water intake, causing her feet and ankles to swell. The doctor was not a specialist in anything. He barely spoke good English. He determined that the fluid in her formula was enough. It wasn't. While there, her lips cracked and her skin became very dry.) All the lotions and chap sticks in the world won't compensate for the body's need for water.

I was most proud of her BG levels. For months facilities used the wrong protocol for her. They ignored my constant concerns about the bouncing BGs from a low of 38 to a high of 547.  Once I got her home and on her old protocol, her counts leveled out to normal ranges. I was so proud of her. I told her how wonderful she was doing.

Facilities were willingly blind to her brittle diabetes. Nursing homes are no place for a brittle diabetic. I don't believe they know what they are doing with Type I diabetes. Any patient is lucky to survive their diabetic care. Nursing homes are certainly no place for America's 200,000 young people, where they cannot interact with people their own ages or have doctors that are NOT geriatric doctors.

Brenna was a brittle diabetic since she was 6 years old. I learned early that while I was not a diabetic expert, I must be an expert in HER diabetes. Yet, no one listened to me as long as she was shuffled from one facility to another.

People tell me to contact a lawyer. Been there, done that. They say her case is too complicated.

Cushings

Brenna was tiny when she was a baby. At a year old, she was an active ball of fire at 19 pounds. She danced throught those early years as just a little mite of a child. Then, something happened about the age of 3 1/2. She began to gain weight. No matter what we did, she gained. She never ate junk food so that wasn't a problem. We watched her diet carefully.  She became a charter member of the mall walker's club at 4 years old.

How many 4 year olds do you know who walks a mile each morning, five days a week? Not many. She did. Nothing changed.    

We took her to university pediatric specialists in two states. Nothing. They didn't even test her for anything except for psychological problems. She went to a Children's hospital. No answers. I begged doctors to please find the answer. They shook their heads.

Brenna was DX with juvenile diabetes at the age of six. We learned the term "brittle diabetes". But even by sticking with a rigid diabetic diet, Brenna's weight problems continued.

School was a nightmare for her. She was bullied first because of her weight, then her diabetes, and at last, for being adopted. Many days she ran home from school as neighbor kids tossed rocks at her. Half way through her sixth grade year, I pulled her out of public school and began homeschooling her. She took to that like a baby duck takes to water. 

I begged for answers for her health problems. I could find none. No one suggested anything more than watch her diet and exercise. I was her mother. I KNEW something else had to be wrong. I loved this child of my heart and seeing her suffer because of the mean spirits of those who chose not to understand broke my heart.

After Brenna suffered her brain injury, a day came that she was near death because of a potassium imbalance.  This event is covered in Condemned to Die. The cardiologist who took care of her was very concerned.  He looked at the pictures of her and circled one with his finger. He said, "THAT is when she began to have problems." I said, "That is when I began taking her to doctors, looking for answers."

One comment the cardiologist made that day stuck in my mind. He asked, “Has she ever been tested for Cushing’s? Have you ever taken her to a university hospital to be evaluated?” No, she was never evaluated. Yes, I took her to not one but two university specialists.

This question about Cushing’s was asked again a few months later when Brenna was in the hospital with pneumonia. The question was asked a third time by a nurse evaluator from a local rehab hospital. At no time in Brenna’s life did anyone tell me her sudden weight gain might be caused by untreated Cushing’s. No one looked, and I was not well enough informed to ask.

I began to research Cushing’s and Type I diabetes. I found one study that indicated a correlation between untreated Cushing’s as the cause of Type I diabetes.

My heart sunk as I relived all the hateful comments people had made to her about her weight all her life, the bullying at school from her peers. My heart cried at the uncontrolled tongues of willingly ignorant people, even within the church, who just couldn’t resist judging and commenting. They judged and Brenna suffered.

As I grew up, I had a beloved older brother, Eldon Clark Blaxton. He gained the name Clark because Clark Gable was the hero of the midwife who helped bring him into the world on January 3, 1945, in Cherryvale, KS. Every girl needs a hero. Eldon was mine. As a little girl, I followed him every step he took. I learned to talk by mocking everything he said. When he went away to the Univ of AL, it broke my heart. I still have a letter he sent to tell his little sister how to act around boys. Eldon was an organizer. He could organize anything, even people. He was a problem solver. I always believed that when things went wrong in my life, I could turn to him. Sadly, the older brother I loved and admired passed away in December 2003. My husband of 28 years died a year later after suffering from heart problems for many years.
After the death of my husband, I told Brenna to focus on her education. She enrolled in college and obtained her Bachelor of Science, Criminal Justice Administration in December 2008. I was so proud of her. She worked hard for the good grades she received. Believing a Masters would further her chances of working with children in the court system, she enrolled in her Master's program.
Brenna worked many hard hours on assignments. She had a personal integrity to give of her best, not just for herself, but for those who were assigned to her team projects.
When my daughter, my only child, became suddenly ill with an anoxic brain injury in May 2010, I longed for the men in my life, the men I admired, to be there to help me with the tragic journey through Brenna's brain injury. But, I wasn't alone.
Our God, our Lord and Savior walked beside us. No one tried harder to not only survive, but to recover, than Brenna did. She faced many challenges in life with grace and dignity. Our government deemed her unworthy of life...not the government of the past few years, the government as it has evolved over the last 30 years.
Our health care system is broken. The break did not happen in the last three years. When the health care system first began falling apart, I was the managing director of a children's medical trust fund in Idaho. Reagan was president. I just did not see the damage coming.
I did not realize the new ideas I saw happening were actually like cracks in a windshield. They start out slow, and, if not fixed properly and soon, the crack will spread until the window needs total replacement. I did not realize that "bio-ethics" committees were so damaging to the health and welfare of anyone with a brain injury. Now I know. You do not see them, but their illusive presence is felt in every ER, ICU, and CCU across the land.
Like millions of Americans, I assumed anyone serving on these committees actually knew something about brain injury rehabilition and their knowledge allowed them to give knowledgeable information to families making end of life decisions. That is a fallacy.
These committees are the fore-runner of the death panels that frighten so many people today as the talking heads on TV scare American citizens about the contents of the Patient Protection Affordable Care Plan Act. Before complaining about the Act, please download it and read it. You might be surprised at how beneficial many parts of the new law are.
After spending 6000 hours with my beloved Brenna in 4 hospitals and America's armpit nursing homes (2 of 3 she was in qualify for this definition), I realized soon just how un-informed these people are. They give end of life advice, based on out-dated medical school text book knowledge. Their qualifications? Pulmonologists, general surgeons, and palliative care doctors who may have no advanced training in brain injury rehabilitation. Some haven't seen med school in over 20 years. Some may not even SEE your loved one, EVER.

Families soon learn that there has been NO new, peer-reviewed, published studies on brain injury rehabilitation for anoxic/hypoxic (AKA Acquired Brain Injury, ABI) in the United States for over 25 years. Insurance companies base their determinations to treat or not treat on this lack of current peer-reviewed, published studies.
America, please wake up. What is happening, from my personal observation, to patients with anoxic brain injury is nothing short of legalized euthanasia. State and Federal governments turn a blind eye while families are pressured to end life before any tests are completed.  
Act now; the brain you save may be your own.
Pam,  Mom to my beloved Brenna Deshawn

Nursing homes--Mom's Viewpoint

    Before placing your loved one in a nursing home, go to medicare.gov and check its health inspections. Commonly that is the area where nursing homes receive the lowest rating. When you choose a nursing home, be prepared to be present to monitor conditions.  

   
    Those inspection ratings tell only half the story. Your family member suffers from the untold story. In the first nursing home my daughter ended up with bleeding bedsores, staff did not properly monitor her diabetes, and she was allowed to lie in feces and a sweat soaked bed for hours because of understaffing. Their business manager had told me to KEEP MY HANDS off my own daughter. The third nursing home was worse.

    The nurses (LPNs)in nursing homes did not know how to tell if Brenna's diabetes was getting out of control because they were using the WRONG protocol for her. They used cheap glucometers and refused to allow me to use Brenna's personal glucometer which gave readings within two points of those at the hospital. So much for the corporate mantra of, "ALL our staff is trained to spot signs of trouble." IMHO, this is a blatant misrepresentation of what actually happens.

    Corporate nursing homes are business ventures with one loyalty: to the investors. Properly caring for fragile patients eats into profits. As the first administrator told me, “This isn’t a hospital. You can’t expect anything more.” She was right. Too many nursing homes give minimum care and no one in society or the system holds them accountable.

    Years ago, I heard an older gentleman say, "A nursing home is where you go to die. I am not going there." I believe he is right.

    If you are a brittle Type I diabetic, as Brenna had been for 22 years, there is no one smart enough in nursing homes to adequately monitor Type I diabetes. Been there, done that. If anyone dies in a nursing home because of complications from their diabetes, it isn't the patient's fault. It is an inadequate system that allows bad things to happen to good people.