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.
