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| 10/5/11 Unresponsive going to Hospice in the ambulance |
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| 10/5/11 He is Life's Star |
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| 10/14/11 I see you.... |
9/17/2011 createn levels up from 2.3 to 3.4; 3hrs of dialysis
9/22/2011 bit off oral brush, the nursing home stressed him trying to remove the brush. We went to the hospital to remove the tooth brush. The hospital team was great and took meticulous care of AJ and brushed his teeth while they had his mouth clamped open. Oral care is real important as bacteria can build up and cause pneumonia. It has been weeks that he has not opened his mouth. I think he doesn't open his mouth intentionally. His mouth is the only part of his body that he has minimal movement. By not opening his mouth he has some sense of control by not letting anyone into his mouth to shove anything else down his throat. I can only imagine the feeling of choking, and not haveing any control to prevent it from happening.
9/23/2011 no dialysis
9/24/2011 He spiked a fever, possible seizure, and bit down on his tongue. He was left unattended at the nursing home for over 5 hrs. His sister, Crystal called me and said he was drooling blood and thought he had the mouth guard in his mouth. Come to find out, it was not the mouth guard, but it was his tongue. I received a call the next day that he had been taken to the hospital at 2am. They think he had a seizure, I think he got upset when I showed him a picture of himself. In fact, it is this large picture posted on the background of this blog. That picture was taken 1 week prior to the accident, he hadn't seen it until now. When I showed him the picture, he looked steady at it and started breathing heavy. I know it was a response to the picture. When I left that day after showing him the picture he seemed fine. I fear it triggered the fever and seizure and perhaps he may have bit his tongue intentionally. When I later told this to the neurologist, he fell silent, I don't think he believes, like I do.
9/26/2011 I headed back to Phx, AJ is in ICU with fevor. Possible sepsis in his leg. Showing withdrawals from the drugs he was given at the nursing home. I want him off the sedatives. He is at others mercy when suffering from withdrawls and cannot tell anyone he is hurting. I am suppose to have a meeting with a neurologist, but it doesn't happen. It is so hard to believe that they cannot take the time to go over the MRI with me. The neurologist went and did the 15min neuro test while AJ is sedated, and called me before he even received the results from the comparison of the first MRI to this second MRI. Still nothing concrete about AJ's prognosis, the neurologist only stated that there may be a secondary wave of brain damage from the initial insult to the brain that is normal, which may have affected him and caused more damage. This may be why he is more unresponsive. I tell him about the responses I get from him, I can tell the neurologist doesn't really believe me. I had the MRI comparison done, I still don't understand the medical part of it ,except that they agree that more damage has been shown since his first MRI. I still don't know who to trust.
I see AJ everywhere, today I saw him in the waiting room in the hospital playing with a game-boy. My mom saw him also....I think he was listening in on our conversation about the results of the consultation, his image projects. I see him walking the streets, knelt down talking on his cell phone, sitting in a run down car at Circle K, his name is everywhere on license plates, Andrews Diesel, AJ Fine Foods, the list goes on....I feel like he is trying to reach me...they are signs from GOD...AJ is trying to communicate to me the only way he can right now....something tells me he is going to be ok. One thing is for certain, these are signs, and this path I am being directed on is not in my power.
Then a friend who is very close to AJ visits him at the hospital. He is unresponsive, but she believes and restores our faith about his strength and character telling stories about how she needs him to help her move and how he is always looking out for her. This is the kind of guy he is, he would risk his own life to help out a friend in need.
9/27/2011 His catheter for dialysis is taken out, his kidneys are back to normal. I guess the doctor finally looked at his chart for his kidneys. I meet with his doctor and he is leaving decisions to the family and compares AJ to an elderly dementia patient who falls and breaks his hip and how the hospital would not get a new hip....wait a minute another more subtle pessimistic suggestions....he is a young man with the rest of his life ahead of him....his condition is what it is, I am not to give up hope.
9/29/2011 I met with the pallative team, this team are not angels. and I wish they would leave me alone. I asked for 3 months, it has only been 6 weeks and I read that 3- 6 months is a marker for signs of recovery. The team asked what would AJ want, first it is not my decision to make for AJ, for whatever reason God still has him with us and He will make this choice. they don't like my answer, and try again....If AJ was in this room, hypothetically, would he want to live like this, and I said you don't get it, AJ is a young man who like most kids, thinks he is invincible and if he were here right now he would tell you that he is going to beat this thing!
I look around and I feel so alone, where is my support to encourage me, to reassure me that what I am doing is the right thing. The detective sent to investigate for the guardianship that I have applied for his care, shows up at the hospital.The detective has a daughter, 7 months old, that is in a Hospice and said he doesn't know which is worse, a small ill child with no future or a young man who once had the whole world ahead of him. I have bonded with AJ longer than he has with his daughter, who now has a slim future for any quality of life. I keep meeting people who are put in my path, with loved ones who are also disabled, and I empathize with their pain and confusion.
9/30/2011 The Dr scheduled to do a graft on his right leg, I am not sure if this is best for him. He is so skinny and grafting would require taking pretty much all the skin off of his other leg to cover the humongous wound on his right leg from the compartment syndrome. I can't put him through another surgery and any more pain from the grafting. I cannot send him back to the nursing home....it was a nightmare. I talk to the pallative team they tell me his leg is sepsis and he needs a resting spot, they suggest Hospice of the Valley, he will be treated with dignity and respect and they will tend to his needs to make sure he is comfortable. I can rest also, and pray. Now it is up to God and him as to what is to happen next.
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| AJ found healing and peace at Hospice of the Valley |
DRAGON MOM
While reading an article in the NYT about a young man who is slowly fading away from a genetic disorder....I think of my son. This young man's mother is a remarkable writer and can somehow find healing in her creative words about her sons illness and her undertaking as a dragon mom.
I am also a dragon mom, but my story is less remarkable as Emily's. Emily is a professor at SF University School of Design. I am an ex-con who would of loved to attend the SF School of Art and Design. My son did not suffer from a genetic disorder that was passed down in my genes, but suffers instead from a disorder that was passed down from my environment onto him. You see, I will stop here, before the dreadful hitch: my son just celebrated his 26th birthday in a vegetated state due to a drug overdose but the comparison does not stop here.
How does one parent a child that has no future? I wish I was not confronted with this answer by losing my son bit by torturous bit. Sad? Yeah, beyond words, but it also comes with a new understanding about life, which I thought I knew. A new vocabulary including words like encephalopathy, hypoxia and anoxic. The helplessness of hypoxic and anoxic brain injuries; is there no hope? So I live day by day in denial that my son's mind has been wiped clean like a hard drive on a computer where it has been accidentally formatted and everything is gone.
When he opens his eyes and looks at me, I believe he knows it is me. I believe that although his mind cannot connect with his body, I pray that his mind still has memories stored in it where there is no damage. He just cannot express it by moving his arms and his legs. He can only blink his eyes and with each new day he trys to move his arms with this short burst of daily energy, I still see him fighting to stay alive and I remind him of his strength. Others tell me coldly, his movements are involuntary reflexes, I say they are wrong! How can anyone say there is no value in what life he has now. It is what it is.....He is warm, his soul clearly in his eyes, expressing pleasure and pain with likes and dislikes for his oral care and comfort listening to rap music, eminem's brain damage.....so I talk to him and tell him about the day that he has awoken to and let him know he is not alone. this is how one parents a child that has no future.
He is in a Hospice, it is not the end of his life, everyday I bring in life. I open the blinds to bring in the sun to sink the warmth into his bones. A cool breeze through the open door that overlooks the Phoenix downtown skyline to lower his rising temperature, music to soothe his soul, laughter to rise his spirit, and my touch to let him know he is loved. Caressing his head, massaging his little atrophied muscles, moving his body that he is unable to move so that it will not get sore, contracted or clot. His leg sliced open to release the poison so his kidneys can heal. Yes, heal....
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| Every morning I would bring the sunshine and life into his room |
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| I refused to let go |
10/24/11
So many thoughts, questions running through my head looking for answers, guidance. Today it is about the philosophical and ethical issues at hand with AJ. I came across an article about "Ryan's Story" AJ is in Ryans home getting exceptional treatment in a hospice. As my days now consist of dealing with life’s end and the dignity and respect honored in dying and moving on.
Aj is clearly on a God given path, as I am myself. AJ's illness and presense has brought so many people and family together. His infliction has put our own personal issue’s to the forefront. My mom and dad and their elderly years that will be coming to an end, but now with AJ's condition they may live longer than him. He has guided them to nursing homes, medicare meetings and answering their own questions of death and the hearafter. All of the questions that have been pretty much been left on a shelf to be dealt with later, are now being discussed; about funerals, cremations, the quality of skilled nursing homes and how AJ's grandparents want to spend the end of their days.
AJ has brought me together with my kids as a parent, mother, and caregiver. My love for my kids has never stopped despite my actions. I know my actions never parrelled my love for them, but it has never faltered. This was not what I had in mind though as far as being a responsible parent once again to my kids, or even with them being adults, I figured they were on their own, wrong. We have been brought together more than ever with AJ’s illness.
Recently Steve Jobs of Apple passed on and I found comfort in knowing that Jobs would be in a life hereafter where AJ can join them. A wonderful race car driver, Dan Wheldon was killed in a fiery crash in Vegas during the 500, a good man. When I think of these people and what a loss, I feel the families pain. Aj may not of been a computer whiz, his computer skills consisted of an occasional Fb entry, to tearing apart a cell phone, inquisitive of its inner components. I think about Steve Jobs taking in AJ’s knowledge of cell phones and perhaps talking to him in heaven about the inner weavings of technology and the life hereafter. Aj was no a race car driver, in fact he would tear up every car he owned just like Wheldon, but AJ was not greeted with the fanfare as Dan Wheldon after tearing up a car, but they all have similiarities. Good men with daring and inquisitive minds and lives that have been put to rest.
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| 10/21/11 It is up to him as he lay resting at the Hospice |
AJ is not gone forever and the philosophical question is AJ still in the image of God’s eye, as he lays in a vegetative state? Oh yes, a chaplain named Charlie would visit AJ everyday and told me he could see his soul in his eyes, there is no question of this, AJ is in the image of God's eye. In fact, when I look at him now, I see AJ's knowledge way beyond anyone, even his doctors. He knows things now that no one around him knows. His presence is so strong, and without words, or actions he has done things that no one else could of done. Or planned. This life of AJ’s has more meaning than anyone I have ever known. As I read story after story about others that are, or have been in AJ’s medical state, they also bring forth a strength beyond comprehension to the ones around them. Love, compassion, strength, hope, faith, moral and ethical issues and an enlightenment to the power of prayer and God.
Life's journey with its omniscience meaning.
Gadaffi and other middle easterners and their slaughter and persecution. The barbaric actions of the world goes on and here AJ lies resting in a place that is so full of love and caring at the hospice where he is healing, I am healing also. As others around us at the Hospice move on and face death with dignity,
The door to his room is open to the balcony bringing in light and life as we overlook the city skyline. Rap music, Eminim's "I'm Not Afraid" can be heard down the hallway of the hospice, coming from his room. Is he communicating? Oh yes! His eyes talk to you, his smile brightens up a whole room, his grimmace sends all lunging forward to ease his pain. He experiences pleasure and pain, love, and fear. I saw him cry and try to talk only to be muted by the slit in his throat that is intended to help him, I question this.
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| city skyline bring in life... |
Some doctors , nurses and onlookers question his quality of life, he looks more at peace today than his worse day on the streets. Then others may say, his life has no purpose, I beg to differ this statement. I find plenty of purpose in his life.
11/1/11 AJ responds by raising his finger when asked if he was in pain. This is the only movement he has and it sends my family out of his room in tears of joy at his response. What we didn't know was that he was really in pain and it was taken every bit of strength he had to tell us. Shortly after this video he woke up the next morning and started to vomit and have seizures.....he had a set back. I stayed with him the entire day massaging his bones, trying to keep his blood circulating. His knees were turning purple. The nurses said they see that in the patients who are ready to die. The heart pulls from the lower extremities like in the knees....he slipped back into a coma....I didn't think we would make it through the day.....I laid by his side....then he woke up!
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| 11/4/11 AJ smiled the day he left the Hospice |
11/4/11 The Hospice and insurance informed me that Hospice was for short term stay, not long term and that AJ needed to move on. This was good and bad news. We fell in love with his caregivers at the Hospice. Their care was meticulous, we could only pray that where we were going would be the path that God has chosen for us. We went to Hacienda.
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