Hospice 10/05/2011

10/5/11 Unresponsive going to Hospice in the ambulance

10/5/11 He is Life's Star 

10/14/11 I see you....

9/16/2011      moved to a nursing home driven by insurance to leave the select hospital

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.

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....

Every morning I would bring the sunshine and life into his room

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. 

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. 

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!

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.

Recovery 09/23/2011

Recovery "Debunking ten myths of "recovery"

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.."

9/23/11 Looking at his grandma, eyes intent. where am I grandma.

9/23/11 Nursing home, under weight, never gave up the faith.

9/23/11 sedated and sick while his sister comforts him at the nursing home.

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.

...it is about giving my son the dignity, respect, and care that he deserves.....

Out of ICU 09/09/11

8/26/12 ICU loosing muscle tone and weight fast

August 26, 2011

Attached to a ventilator, I hesitated on the trach. I couldn't read up on it fast enough. He was breathing on his own, but the doctors said it was vital to help him breath to allow his body to heal. Every day he would lose more muscle tone. He wouldn't track for the doctors, but would follow sounds by turning his head. The doctors said it was a reflex.

9/4 fevor 102; surgery one lateral upper leg sewn; no dialysis; every other day, no antibiotics to bring down fevor and blood pressure low.
9/5 went to Select specialty hospital stable, DNR, hep drip, dialysis every other day.

9/9/11 passy muir valve

His stay in ICU was insurance driven, and despite the fact that he was still very fragile and critical, his allotted time to stay in the ICU was up and he had to be released into a skilled nursing facility. I appealed to get him into a specialty hospital instead for better care. Before his release from ICU the doctors were rushing to ween him off the ventilator, dialysis and took him into surgery to staple his upper thigh with a low grade temperature that they never seemed to pinpoint. Looking back I don't think the surgery was a good idea....he had a set back when he came out of the surgery. The family learned about the set backs in an education class for strokes and brain injuries that was held at the hospital. We learned that our loved ones would take a few steps toward progress and then have relapses that would  take them a few steps backwards then, have to start all over again. We also learned that we are not alone dealing with a loved one with a head injury. I learned somewhere that there is a new head injury every 15seconds. The number has risen tremendously with the wars in the middle east.

When he arrived at the specialty hospital the next day he seemed more unresponsive. My brother seemed to think that he just needed to let his mind and body rest. His sister took this picture of the passy muir valve that he received with a caption "he can talk now"....but he never made as sound. I am not sure if this passy muir valve was such a good idea either. I learned later that this type of trach has a very cumbersome plastic bag that crowds the air passage way. I can only imagine the suffocating feeling this type of trach can bring. The idea of the passy muir valve is to produce sounds out of his throat. I wondered how in the world he was going to talk out of his throat when it was going to be hard enough to speak from his mouth. It took everything he had to open his mouth and produce a smile.....It would be months before we would see another smile again.