Thursday, May 28, 2009

Always take your body guard to the hospital with you

Memorial Day has special significance to my husband and me -- it was our first official date. We saw each other every day from May 30 until our wedding on October 16. That was 38 years ago. There are few days we haven't spent together in one way or another since then.

This weekend he needed medical help and Saturday morning we stopped in at the Emergency Room. If you read this blog last year about this time, you'll know that he visited the ER then and our hospital experience was traumatic and dare I say, life threatening. So we tried another hospital and entered their hallowed halls armed with experience and determination to advocate for appropriate health care.

The hospital staff we encountered were an uneven blend of abilities. But everyone we encountered at least seemed to have heard of ALS, my husband's chronic health villain. It is obvious to anyone (even a cave man) that Derrol has difficulties breathing. Yet, the ER doctor prescribed a dose of delaudid. We weren't familiar with the drug, other than we had heard it mentioned on television programs and it seemed to be of the opiate family and was the equivalent of morphine. It required a pre-injection of something to dispel nausea. We looked at each other and declined the injection.

We learned later that delaudid can depress respiration. Perhaps it was the nurse's hesitancy to give Derrol the drug that set off alarms. He dragged his feet in administering the pain killer and patiently answered questions and kept saying 'morphine.' This male nurse seemed the only voice of reason we encountered in the ER.
Our general practitioner doesn't do hospitals, so his proxy stepped in and addressed my husband's problems. One was an impacted bowel. Not a romantic indisposition by any measure and the remedy certainly requires a strong constitution. The doctor took it upon himself to manually un-impact the problem. Yet while he worked on one end, my husband encountered severe respiration problems at the other end. Who knew that such a procedure could lower respiration or, as one nurse told, could cause heart attack.

So with his CO2 levels skyrocketing and his oxygen levels falling, they zipped him into the Intensive Care Unit. It is the equivalent to solitary confinement in a prison, we came to find out and just about as hard to get out of. They don't like visitors there. But with our history we weren't about to let their arbitrary rules separate us or inflict harm on Derrol.

I thought I was quite reasonable in my request to be with him. They thought I was not.

Of course by this time the CO2 levels had rendered Derrol nearly unresponsive, so I stood in the hall and said I would not leave. One officious man told me that I was harming other patients and that it was the rules and I must obey or some such drivel as if he were talking to a moron.

I heard him call security when I kept repeating that I was Derrol's primary caregiver and would be when he returned home and I needed to be part of this care regime and help make decisions based upon the needs of his unusual medical situation. He quite nastily told me that I was in a hospital and they knew what to do.

I simply asked, "How many ALS patients have they taken care of?"

He replied that they have taken care of ALS patients before. And I asked how they thought they knew Derrol's situation better than I did. That's when he went to call security.

Fortunately before the cops carried me away, the proxy doctor stepped in with his best father knows best tone to tell me they had rules for a reason. I suggested that we had a near death experience in another hospital last year and that we would NOT trust Derrol's health to them just based upon them telling me they knew what to do.

It went back and forth for awhile and the officious little man was attending Derrol and saying, "We need to get the Foley catheter in and a pick line inserted."

I responded with a resounding -- NOOOOOOO!

But of course the response was 'that's the rules.' EVERYONE GETS ONE.

Long story short, the doctor seemed to get the idea that perhaps I knew Derrol and ALS a bit and letting me stay couldn't do much harm and if I did, they'd let security cart me away. Derrol perked up at the word 'catheter' and parroted my NOOOOOOO. We managed to fend of the invasive techniques.

But then they sent in the pulmonologist who wanted to clear up his lungs. His lungs are fine, thank you. He just has no muscle to make them pump. His diaphragm and abdominal muscles are too weak. They laid him flat on his back for three days and pumped him full of breathing treatments and oxygen and tried to blow the CO2 out with a bi-pap set so high that he was unable to get a breath. It was another nightmare, except these were people who actually had good intentions and wanted to give him good care.

So now we're not sure which is worse -- incompetent care givers who don't give a crap or those who overdo it with heroic efforts that aren't necessary or on target.

It became apparent that they didn't want to release him until his breathing was 'normal.' Well, that wasn't going to happen. I contacted the ALS Association and I thought they might need to come and be an advocate for us to get him out of the hospital.

It took more than a day for them to address the bowel problem again. But finally he got cleaned out. Dripping and gasping he wheeled his chair into the van and I managed to get him home. We've spent the week trying to get him back on his feet. Not from the original problem -- but from the treatments and most of all from laying in bed for those three days.

Anyone with ALS really needs an advocate with them when approaching health care providers. It is best to have someone who speaks the jargon and understands their tests and results and can fend off stupidity such as delaudid or catheters or pick lines. We must have had angels watching over us because it was only by luck that we made the right choices.

Derrol's last nurse was in real life a teacher at a nearby college. He teaches nursing. I urged him to teach more about ALS and his response was not heartening. "Why? It is so rare, it isn't a priority."

Well, it certainly IS a priority if your the poor guy laying on the gurney looking up at medical personnel who cluelessly endanger your life because you have a RARE disease.

Saturday, May 9, 2009

Libraries -- Who needs em?

Like every other city, county and state across the United States, Florida governments are fighting to balance budgets. And every time some legislators get together they see dollar signs whenever they look at the monies being allocated to support libraries. Some states have intelligently set aside money for libraries and ensured it can't be touched, our state has no such reverence nor concern for the public knowledge entrusted to libraries.

A few weeks ago the legislators agreed to delete all funding for public libraries from the state budget. That's $21 million in their pockets and their budget looks more balanced.

What they didn't expect was the outcry that went up as soon as word got out. Granted, many of our elected officials may not be 'readers.' Such is the statement made recently by the assistant county director of Seminole County. And maybe they receive a salary and income that allows them to purchase whatever books they want. Or maybe taxpayers buy their books for them. But most of us on the other side of the desk who happen to like to read and have no other access to information, depend on the library.

Some children would never see a book in their house, if they couldn't bring them home from the library. Nor would they get a chance for valuable social interaction nor understand the delights that books can bring into their lives without story time.

  • Without public libraries where would elderly people on fixed incomes go for reading entertainment, and other media experiences?
  • Where would they go for tax information or assistance?
  • Who would they ask if not a librarian for contact information for tax specialists?
  • Where would young parents go for child raising information?
  • Where would graduates go for job search information -- including how to write a resume and cover letter to what profession to chose and how to study for their tests -- police, civil service, post office, CPA, LSAT, SAT....
  • Where could you get the latest in the Twilight series?
  • Where would young adults go to read?
  • Where would teens volunteer or gather together to put on skits and demonstrations and activities for younger kids under the guidance of a child librarian who not only loves books, but teenagers as well.
  • Where would small businesses access free marketing materials and who would the Small Business Association turn for such information?
  • Where does the widow go to find how to cope with grief?
  • Where do people go to read about the illness afflicting them or someone they love?
  • What better atmosphere than a library for young love?
  • Where else can boys find out about sex and it isn't illegal or smutty?
  • Where else will young artists find the drawing books they need or the craft books or fabric art books they need to express themselves?
  • Where's the home builder, do it yourselfer, inventor, going to find out how to fix a leak, install a water heater, add a deck, redo a kitchen, bathroom, bedroom, or landscape a yard -- all in one place without spending a dime?
  • Where else can people donate their books and see them sell for 50 cents or $1 and know that the library benefits from the sales and thus costs taxpayers a tiny bit less for the services the Friends of the Library donate?
  • Where are repositories of history maintained?
  • Where do people go when times get tough? The library.
  • Where else can you find Patience and Fortitude?
Andrew Carnegie might have been a greedy bastard when it came to business deals, but his idea for libraries redeemed him. "From Fiji to Florida to Fresno, Calif., Andrew Carnegie built 2,509 libraries between 1881 and 1917, mostly in America, the British Isles and Canada. To this day, Carnegie's free-to-the-people libraries remain Pittsburgh's most significant cultural export, a gift that has shaped the minds and lives of millions."

Herb Elish, library director of the Carnegie Library in Pittsburgh takes his library job seriously. He thinks "libraries can 'raise up people's consciousness,' leading to 'greater literacy, better jobs and rich, useful lives.' He wants each library, old or new, to be a place 'people want to come to, think is enjoyable, get a lot out of and have fun at, because at the end of the day, it'll just make their lives better.'

I'm with Herb. Teach a third world mother to read and the quality of life improves for the whole family. Give the family library cards and watch them grow!

Yet, our legislators see libraries as liabilities, drains on the budget, a service not needed. Of course they say the same thing about our public schools when addressing art, music, and sports -- well unless they happen to LOVE sports, which most of the male members of our government do.

But here in Florida people spoke up. They visited their legislators' offices, wrote emails, made phone calls, and literally hounded the governor until he threw up his hands and asked the legislation to take another look at that proposal. Library directors across the state had hung their heads and were seeing a bleak future because the library issue as far as they knew had been decided and $21 million dollars had just evaporated from their own budgets.

But the people had spoken and the governor wanted his life back and the legislators must have realized that most of the people who vote also possess library cards. Because they did a miraculous thing. They, even though the discussion was NOT on the agenda, revisited the library decision and -- changed their minds.


"Yesterday afternoon, during the Joint Budget Conference Chairs process, the House proposed funding State Aid at $21,253,978 and last night the Senate just came back and accepted, but the Senate was not willing to accept the funding source proposed by the House so state aid funding was left in limbo overnight.

This morning they came back and met through the day. The decision was reached shortly after 7 p.m.

As FLA Lobbyist Chris Lyon explained it, you did what cannot be done. State Aid was not a conference issue. The Joint Budget Conference Chairs weren't even supposed to be talking about this.

So last night Chris was is sitting in bar before going back to the 8 o'clock meeting, and a guy walks up, sees he is working on appropriations spreadsheets. Chris tells him he's working for libraries (and did he ever!). The guy works in the Governor's office and wants to know if they've restored the funding yet. He says everybody in the governor's office knows about it because the phone hasn't stopped ringing on the issue and they've had citizens coming in person on the issue since Thursday."

The people spoke and for once, our representatives listened. Freedom of speech -- they teach you that in the libraries. You can read alot about it in the 973 section devoted to American history. So, it looks like our public libraries in Florida will be allowed to limp along for awhile longer. Of course, there is no set aside funds to run the library, we are dependent on the county legislation for our bread and butter here in Seminole County. We understand there will be lay offs just as soon as the county commissioners approve them, on or around May 21.

But for now we savor a small victory and hold dear our freedom to information that otherwise would be closed to all of us.

May I suggest that you visit your public library today? Walk in and taste freedom. There is nowhere else in this United States quite so free. And, librarians across the country protect your privacy. Do you remember back when the government wanted to check on readers to see what they were borrowing from the library? Well, they couldn't. Because libraries already thought about their patrons' privacy and DO NOT KEEP SUCH RECORDS. If you want to know what books you've read, you better keep your own list because libraries do not do it.

Democracy lives in libraries and when they shut their doors, we need to worry about what comes next.