While Claudia was in the hospital I had plenty of time to observe people as they performed their duties. It was interesting to watch the staff at work; their routine was different than I would have expected. In fact, it clear that I was watching a finely tuned machine at work, one that had been crafted by many people for decades or longer. After over three weeks of visiting, here is what I determined:
You will notice that the patient and the loved ones are missing entirely from this picture. I determined that the job of the patient is to lay in their beds, be quiet and do what they are told. They are merely the subject of the reports. Any patient that does anything out of the ordinary is medicated or "treated" by a psychiatrist. Patients that actually want to move or act alive are bothersome so they must be made calm and relaxed, so they can be tested, so the nurses can fill out their reports.
And the loved ones? They are simply annoyances.
A few days into Claudia's stay, Ivisited her in her room in CICU. She was heavily sedated with so many drugs that it was amazing, and still the nurses had to keep her in restraints in order to keep her from pulling out her breathing tube.
The doctors (Sterz and Rothfeld) were very upset with Claudia. They both told me if she continued to attempt to pull out her breathing tube they would be forced to cut a hole in her throat. I was not sure why, but this made me very uneasy. I couldn't put my finger on it, but something with their attitude seemed to be wrong.
I decided it was time to see if I could see what was going on. It was time to look at Claudia. You see, I felt that Claudia might be trying to communicate something. There was a reason why she was moving around restlessly (she didn't normally act that way), and she had some goal in mind regarding the breathing tube.
I began by questioning the nurses (I tried to talk to the doctors, but they could not be troubled to have a real conversation with a live human being). What was Claudia doing? How was she moving? What movements had she made over the late few days?
At first I thought the breathing tube must be extremely painful, so perhaps Claudia was trying to rip out the source of the pain. Dr. Rothfeld just snorted and said unconscious people don't feel pain. Sigh, such arrogance. It must be so lonely to believe that human beings are simply bodies.
The nurses were more helpful. One nurse, in particular, told me that other patients told her the tube was uncomfortable but not really all that painful. I asked if the disease could be making it more painful - and the nurse said she didn't believe so.
A picture began to emerge. I became more and more convinced that my wife was trying to accomplish something from the depths of her drugged sleep.
It was time to see for myself. I stood there with Dominic for a while, just watching Claudia move. Something became apparent - her movements, as I suspected, were not random. No, actually, far from it.
Claudia was moving her legs. She was actually trying to get her legs up in the air, as if to say "look at these!"
Well, I thought, if she wants me to look, perhaps I should look. I looked at her legs and her feet, and immediately something became clear.
You see, Claudia's asthma has been treated for years with steroids. These steroids have a very unpleasant side effect - they fill the body with water. Lots and lots of water. Before she went to the hospital, Claudia's legs and feet had so much water that the skin bulged out and fluid actually leaked out from the pores. In fact, one of her feet had leaked so much water that a huge water-blister had formed and turned purple with a mixture of blood and water.
Claudia had been having trouble with her legs for some time (over a year) beginning with a bruise (a very large one) that she got when a bottle dropped on her leg. A doctor cut off the bruise, and the resulting wound was exceptionally painful. The pain had been masked for the better part of a year with a twice-daily application of EMLA, a cream prescribed to numb pain.
As I examined Claudia's legs I noticed a bandage over one foot. I assumed they were just covering up the bruise - then realized Claudia might be in some pain from the bruise. I asked the nurse what was being done for her leg pain. After the usual dumb look (unconscious people don't feel pain, after all) I got the answer that nothing was being done.
I was very thoughtful for the rest of the day, and returned that evening with another friend (Jim Frankel). Jim is a wonderful friend who helped Claudia and I more than can be communicated.
A new nurse was on duty, a woman by the name of Anne. After seeing Claudia, I asked Anne if I could put some EMLA on Claudia's leg. Anne angrily answered that no EMLA was needed. After all, if it was needed the doctor would have prescribed it! Besides, who was I to say what was needed. I said some angry words to Anne and stomped back into Claudia's room.
Jim pointed out that Anne was actually a good person and suggested that I apologize. I decided he was correct and spent a few minutes conversing with the lady. I told her I really cared about Claudia and apologized for my outburst. I explained that I had been caring for her for years, and thus had gained some knowledge of how this woman worked and how to help her.
Anne understood and from that moment on we were best friends. It was an astounding change, from the "you don't know anything, how dare you question me" attitude to the "we're practically best friends" Anne that I came to know.
I asked Anne if I could apply some EMLA to Claudia's wounds on her legs. Anne said the hospital didn't have any EMLA, to which I replied that I had some. Anne said if I got my own it would be fine for me to apply it.
I practically ran home to get the EMLA, then ran back (stopping to gather up Dominic). We went back to the hospital room, closed the curtains and removed Claudia's dressing from her leg.
I was shocked. Someone had obviously concluded that something had to be done about her foot. Someone had operated and removed the entire top, a strip of skin going from one ankle to the other, a full quarter inch deep.
There are very few places on the human body with more nerves than the feet. And I understood immediately what Claudia was trying to communicate.
Her foot hurt like hell. It hurt so bad that she felt it under incredible sedation. It was such a terrible pain that she was attempting to tell someone, anyone, please do something!
Someone held her foot while I applied the EMLA. Claudia spasmed in pain (EMLA burns for a few seconds when you apply it), then immediately calmed down. Her body relaxed for the first time since I saw in in CICU, and she went to sleep. She immediately went to sleep.
I asked Anne to ensure that EMLA was added to the dressing change order. Anne said she would inform the wound nurse. I actually was not aware that Claudia had a wound nurse until that minute, so I decided it was time to have a conversation with the woman.
In the meantime, I had to visit Claudia twice a day to apply the EMLA myself. I was a little surprised that the nurses allowed me to do this, until I realized that they understood that it really worked - Claudia was much calmer.
The doctors continued to insist that Claudia would need to have this tube inserted into her throat. At first I thought this might be a reasonable solution, until I questioned another nurse to find out what it really meant.
If they performed a tracheotomy, then Claudia might very well spend the next six months (if not the rest of her life) in a hospital or convalescent home. You see, the nurse explained, this is not something that can be supported in a home environment.
The doctors had tried to "wean" Claudia off the breathing tube twice, and each attempt was a failure. Claudia could not breath on her own, or so the doctors believed. I was told they would only try three times, then do the tracheotomy.
I talked with both doctors. I made it very clear that no more operations would be performed on my wife without my express, written permission. Period. Her foot was operated on without permission, and perhaps that was necessary, but those times were at an end. They would do nothing, I explained, without discussing it thoroughly with me first.
Oh my, the doctors did not like this at all. The administrator in charge of Claudia's case (another woman named Anne) was very opposed to my "new attitude". She didn't understand why I was acting this way.
Sigh. How do you explain to someone who is apparently incapable of caring about another human being care what caring means? These doctors didn't care, they just wanted to get Claudia to someone else. That was plainly obvious.
Now, I was not just operating on my own here. I was making regular calls to my our real doctor for advice and information (since Queen's doctors were not communicating very well). My doctor said that putting Claudia through a tracheotomy after three tries seemed a bit hasty. He felt that the forth or fifth try would be very acceptable, especially considering her personality (she would not like a long hospital stay) and how sick she had been. My doctor advised me to ensure they those additional attempts before doing something more dramatic.
In addition, I had numerous conversations with her respiratory therapists. In their opinion, Claudia was doing extremely well. The disease was more or less handled and the fluid was quickly emptying from her lungs. They were unanimously of the opinion that a tracheotomy was premature at this point. Their opinion matched our doctor's - a tracheotomy would be justified on the forth or fifth attempt.
I made sure I was there on the third attempt to remove the breathing tube. Oh, I remember the tension. I was fully prepared for a showdown with the doctors. I was completely willing to do whatever was necessary to prevent a tracheotomy. My wife would not want to be locked in a convalescent home for months. In fact, I was not sure that she would survive it at all.
The tube came out and my wife breathed on her own. She had been in the hospital for two weeks.
Unless otherwise noted, all photos and text is Copyright © Richard G Lowe, Jr.