Alexander de Seversky " I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a man pretty much at his own rating. If he permits his loss to make him embarrassed and apologetic, he will draw embarrassment from others. But if he gains his own respect, the respect of those around him comes easily."
As days go by "not knowing" I surf the web for answers and discover I am not alone. I am told by doctors that AJ is in a "vegetated state." I learn about Terry Schaivo and download a book her family wrote "A life that matters." I also discovered a you tube video with more about medical awakenings. Donny Herbert a fire fighter with a hypoxia brain injury wakes up from a coma after 10 years and now has neurologists looking into how they view different states of consciousness and a new term "minimally conscious state." I read about deep brain stimulation, about clinical trials of ambien in the NYT and other drug cocktails. Then there is Steve Boggan's article in The Guardian "Reborn" I want to know more and their stories give me hope when there seems to be none.
I have this team of case workers, social workers, and nurses and one doctor. This team is called the "palliative care team" they are following me around talking about the "quality" of AJ's life. I am learning a whole new vocabulary; palliative, hospice, encephalopathy, anoxic, hypoxia, Glasgow coma scale, quality of life, and ? Explaining that he will not be the AJ I once knew. They want me to pull the plug!
I contemplate and get on my knees, what is in my heart, is my faith, and clearly this is not my decision. Everything happens for a reason. This is not what I planned for the future with my children, but then I realized....this is the plan.
I tell the team that despite what the doctors say, he responds to the family and we are going to do what ever we can to help him. I tell them that I think AJ is not in a vegetated state, but in a minimally conscious state, they didn't even know this meaning. One nurse said, "you mean persistent vegetated state?" I feel perplexed, because they do not know what I am talking about. Maybe I don't know what I am talking about. I read later in the medical reports, that the medical team wrote that the family is in denial about his condition and they would proceed to help AJ, to help the family.
The doctors and hospitals and nurses approached his initial fall with the idea of saving him....where in this mayhem of healing did they stop. No rehab...not our job...no stretching his muscles...no place for a child with needs....then he doesn't have enough needs?
I don't understand, I know there is something that they can do, so why are they sending him to a nursing home. His care is termed "custodial".
"..you go through storms in your life, but you don't know how long the storm is going to be.."
He was sent to a nursing home, his move was insurance driven. I was told he wasn't sick enough to stay in a hospital setting. It had only been a month, he lost so much weight. His muscles were atrophied. The nursing home sedated him heavily. He just stared at us, but his eyes were so intent and talked to us. He was still on dialysis, recovering from the cardiac arrest, and compartment syndrome. The nursing home was overworked and understaffed.
The nursing home scene was a new awakening for me and my family. I had no clue our sick and elderly were being housed as I had seen. I was putting my trust in the medical professionals and case workers to provide comfort and understanding. I didn't realize until
later, that no one had any intention of helping my son. There was no range of motion, no alternatives, no one told us the prognosis. No neurologist had taken the time to show me his MRI and explain his situation in detail. They just heavily sedated him just waiting for him to die.
It was at this nursing home that I realized that there are a group of professionals that don't believe in miracles, or have faith, or respect what life we do have and the cards that are dealt to us through disability. This group only sees how much it is going to cost, or how many people it will take to care for him, and the time it is taking the professionals to stop what they are doing to attend to AJ's needs. They don't see hope or a future. I was filled with so much confusion. I thought doctors had a oath to fulfill to take care of the sick.
AJ would clamp down on anything that was put in his mouth. He had an oral care brush break off in his mouth. The nurses and aids came in one at a time trying to get him to open his mouth. I told him it wasn't going to happen. The more they tried to open his mouth, the more stressed out he became. His gums and lips were bleeding from them prodding into his mouth as more items broke off. Wooden tongue depressors, metal objects, plastic, you name it. I insisted they call a doctor, give him something to relax and use a professional device to open his mouth.
This is when his kidney doctor came in and informed me about the cost of the professionals coming in to care for him and the cost of the hospital to remove the oral care brush in his mouth and gave me the lecture about the quality of his life and asked me if anyone had told me that he would never walk or talk again. He also mentioned that he hated to see loved ones give up their everyday lives and make their sick loved ones their sense of purpose.....I said what, AJ IS MY SON AND NO MATTER WHAT HE IS MY SENSE OF PURPOSE IN LIFE!....I patiently listened to his speech, I told him no one has told me anything, no neurologist has taken the time to sit down with me and talk to me about his MRI and condition. I also told him despite how he felt, we were going to do everything we could to get this oral care brush out of his mouth. I asked him 'if he was his kidney doctor' and he said 'yes.' I asked how his kidneys were doing and what his levels were, and he said he didn't know and he had to get his chart.
So, here is his kidney doctor that can't even tell me how his kidneys are doing but can tell me all about the quality of his life and give me a neurological diagnosis.
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| 9/23/11 Looking at his grandma, eyes intent. where am I grandma. |
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| 9/23/11 Nursing home, under weight, never gave up the faith. |
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| 9/23/11 sedated and sick while his sister comforts him at the nursing home. |
The nursing home scene was a new awakening for me and my family. I had no clue our sick and elderly were being housed as I had seen. I was putting my trust in the medical professionals and case workers to provide comfort and understanding. I didn't realize until
later, that no one had any intention of helping my son. There was no range of motion, no alternatives, no one told us the prognosis. No neurologist had taken the time to show me his MRI and explain his situation in detail. They just heavily sedated him just waiting for him to die.
It was at this nursing home that I realized that there are a group of professionals that don't believe in miracles, or have faith, or respect what life we do have and the cards that are dealt to us through disability. This group only sees how much it is going to cost, or how many people it will take to care for him, and the time it is taking the professionals to stop what they are doing to attend to AJ's needs. They don't see hope or a future. I was filled with so much confusion. I thought doctors had a oath to fulfill to take care of the sick.
AJ would clamp down on anything that was put in his mouth. He had an oral care brush break off in his mouth. The nurses and aids came in one at a time trying to get him to open his mouth. I told him it wasn't going to happen. The more they tried to open his mouth, the more stressed out he became. His gums and lips were bleeding from them prodding into his mouth as more items broke off. Wooden tongue depressors, metal objects, plastic, you name it. I insisted they call a doctor, give him something to relax and use a professional device to open his mouth.
This is when his kidney doctor came in and informed me about the cost of the professionals coming in to care for him and the cost of the hospital to remove the oral care brush in his mouth and gave me the lecture about the quality of his life and asked me if anyone had told me that he would never walk or talk again. He also mentioned that he hated to see loved ones give up their everyday lives and make their sick loved ones their sense of purpose.....I said what, AJ IS MY SON AND NO MATTER WHAT HE IS MY SENSE OF PURPOSE IN LIFE!....I patiently listened to his speech, I told him no one has told me anything, no neurologist has taken the time to sit down with me and talk to me about his MRI and condition. I also told him despite how he felt, we were going to do everything we could to get this oral care brush out of his mouth. I asked him 'if he was his kidney doctor' and he said 'yes.' I asked how his kidneys were doing and what his levels were, and he said he didn't know and he had to get his chart.
So, here is his kidney doctor that can't even tell me how his kidneys are doing but can tell me all about the quality of his life and give me a neurological diagnosis.
...it is about giving my son the dignity, respect, and care that he deserves.....
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