Dear Health Team,
We see you as we sit with our sick family members. We understand in part some of the stress you are under. We hear the codes–blue, yellow– and other urgent announcements constantly over the loudspeaker. We notice the patients that are causing you grief and are harassing the female staff in unspeakable ways. We know that we add to your stress with our many questions. We witness you snap at your co-workers and treat them disrespectfully. We know that you feel the care slipping out of the health care system. We comprehend that beds are full–hallways are crowded with the overflow. Yes, it is hard to miss.
We are also grateful for the kindness and humour that you manage to pull out from somewhere deep inside your reserves. We hear your words soften as you take a minute to assess–and reassess–the situation we are facing. We know you are juggling a dozen balls and leaping over land mines to get the job done. We only know a tiny piece of the story. That woman over there is Stage 4 and in tremendous pain. That man has ongoing issues because of addiction and you are not sure if his friend just brought him some painkillers. I am pretty sure that other man is just a complete pervert but I am trying not to judge what he is asking you to do but I do notice how professional your response is to him when I think I would have slapped him. In truth, we only see a fraction of the professional stress you are under and we probably do not even take the time to think about your own personal lives that may be equally as stress filled. I honestly do not know how you manage in this climate. You have our respect.
I know that you also know how challenging it is for us. When my father was admitted to Emergency two days ago, you observed a man who seemed coherent and not too ill in your eyes. However, you missed the fact that he was not well. Yesterday when I arrived, a doctor was kindly telling him, my sister, and my mom that because his vitals were stable and all his tests were coming back normal, that hospitals were for sick people and he was not sick so he was going home. I could feel the anger rise within me. All those crazy hospital television shows that I watch had deceived me. There were no residents here willing to rack their brains to figure out what might be occurring and no doctor who had enough of a breathing space to think outside the box about what might be missing from the picture. It is not your fault that TV makes you look like demi-gods.
It was me who first noticed that something was terribly wrong with my dad that first afternoon at the hospital. It took me about an hour to realize that he was having mini-seizures–or at least what appeared to be. When I finally did, I called out to someone on the health team that I thought my father was having a seizure. I did not balk when I was told that he would be there in a minute–I knew I was not a doctor and that he was in the middle of something. When I got back to my father it was clear he was having a seizure so I stepped out and said calmly but insistently that he was having a seizure. The bay was suddenly filled with the health team as Dad appeared to have a larger one. Watching your loved one have a seizure for the first time is scary when you are not a medical person. As Dad cried out, a piece of my heart crumbled. Only those people who have witnessed this will understand that visceral reaction to the shriek.
Twenty four hours later, the doctor was saying he was well and needed to go home. There was no explanation as to why he had the seizure or even if it was a seizure. The original reason for admittance was forgotten and not being addressed at all. Without a diagnosis after this sudden onset event, someone wanted his bed more than his wellness. The face twitching that would occur three hours later was downplayed. The goal was to send him home and the shift in care started to happen. While the medical team was getting ready to dismiss him, my sister and I were in the hall whispering, making a list of questions for the doctor, wondering about a stroke. We were not convinced that going home was the right option. He had to walk before he would be released. The doctor refused to talk to us. He was rude to the nurse that made the request for us. Had we stepped on toes, driven staff crazy with our questions, or done some other medical no-no that had created this scenario? Did we not know this patient best and know that something was very, very wrong if someone would kindly listen to us for a moment instead of insisting politely that he was not ill?
I was not there when Dad collapsed during his mandatory walk and had another episode again. By the time I returned that evening, he was a completely different man. As I sat with him until 2:00 am, I could see his deterioration. I am incredibly angry this morning but I hang on to one thing. God intervened on our behalf when the hospital staff stopped listening to us. If Dad had gone home, he might be even worse than he currently is. The doctors are completely stumped as to what may be happening. They now are parading their team of residents around Dad. I hope those baby docs are listening and considering carefully how a patient was almost sent home, now may never have a normal life again. My father is a resilient man and my prayers are lifted that what has been lost will be restored. I still hold out hope that the doctors will be able to come up with a diagnosis. I understand from my sister that he is currently under 24-hour supervision because he is confused and belligerent. He fell out of bed after I left last night. Luckily, no harm was done. He got up to lock the door of his apartment where he thought he was. Sigh. I have to believe that God has this one too. It has been a highly stressful time for the family. Last night, Dad had lovely nurses who listened to me as I said he was hallucinating. One of them came by as Dad was plucking a potato out of the air to eat. When asked where he was, Dad responded hell. I turned to the nurse and shrugged, saying, I guess that is a baked potato he thinks he is eating. We laughed, but only because I did not want to cry.
I sat there reading about seizures from a site that a friend of mine sent me and wondered if he had had all kinds of them. I was mentally checking off what I had observed and wondering if the medical team knew how complicated and varied seizures were. I told the resident at 1 am who saw him that I had been consulting Dr. Google. I did apologize but I am at my wit’s end. I simply had some questions from the reading that I needed to ask but she had no answers because she was not a neurologist. I cannot channel Drs. Grey or Shepherd to help you get to the bottom of this mysterious case. Those TV shows do not help you with patients who want answers and fixes yesterday. We really do not mean to be annoying. We are simply frightened and frustrated because we have known all along how sick Dad really was and we are desperately trying not to blame you for not having the time to listen to us. We have felt the wolf nipping at our heels the whole time but somehow could not make that clear to you. I am sorry there was not a real conversation about our intuition compared to your knowledge.
So dear health team, thank you for your work in a very stressful environment. I do not know how you do it. Ours is one of the families that you had to deal with these past few days and we were not always kind and generous. I am sorry for that. I suspect you want to do things differently but that your hands are somewhat restrained. I am hoping that the Great Physician will keep intervening on all of our behalf.
The daughter of a patient who was always sick despite the lack of obvious signs