August 11, 2012 / Year One

              2012 JUNE-DECEMBER

It is AJ's love for life that will pull him through these dark days and nights. I miss his voice...he still cannot talk, but his middle finger still works with a smile. Always smiling, laughing, running jumping and tumbling down the ski slope. It will be his strength, your prayers and God that will get him back up on his feet again!

              BIRTHDAY 25 AGAIN

THERAPY

EATING

THANKSGIVING AT GRANDMAS

CHRISTMAS/SEIZURE 12/22/12

Another Set Back 2012 Jan-June

              February 2012

2/2/12 Therapy at SWAN

AJ is looking like Brad Pitt. He is not on his way to the red carpet, but he is on his way to therapy at SWAN's outpatient therapy. He is being transported on a gurney. SWAN is a very active place filled with a lot of hope. They did not know quite how to handle AJ showing up in a gurney. He didn't have a wheelchair yet. His right arm is contracted up with a closed fist and his left arm has no movement. This is so unfortunate for him as he is left handed.  We have great hopes for him as the therapy is beginning.

AJ has a pressure sore from the fall on his coccyx (tailbone) that is not healing properly. Probably due to a lack of good nutrition. He is still on a feeding tube. At least at Hacienda he is now get the cc's of food through his tube to help him gain weight. He has lost so much weight and his bones protrude. A wound vac has been applied to his pressure sore to help keep it clean. The wound is open to the bone, nerves and muscle. If it doesn't heal he will need surgery, so we are trying to get in as much therapy as possible to stretch his contracted, shorten muscles by guiding movements to activate his brain and help him connect. This therapy will help him to remember how to move and develop new pathways as the brain is rewiring. Right now his only movement is his head and reflexes opening his mouth and biting down on anything that gets close to his mouth.

2/24/12 Valentines Day

He is standing on the tilt table at Hacienda underneath the Valentine balloon. Will you be my valentine AJ? When he was 14 he gave me candy and flowers for Valentines. It was such a special day. You can be valentine any day AJ, we are going to have many valentines a head of us.

               WHEELCHAIR

2/24/13

AJ has some new wheels. I can tell that he knows he is in a wheelchair and is not to happy about it. He cannot talk, but his eyes and face say everything. He knows he is in a different place with some very ill people. When he sat in the day-room for the first time at Hacienda, he looked around and about came up out of his chair, wanting to say something, but nothing would come out of his mouth. His head bobbing all around,  I could see in his eyes and actions what he was saying the only way he could, "What is going on, where am I?"

                     INDEPENDENCE

3/9/12 Visiting Grandpa

Now that we have the wheelchair we can go outside and visit. AJ hasn't seen much sunshine. Grandpa is trying on AJ's new sunshades, AJ thinks this is funny. 


       PRESSURE SORE

3/22/12 Pressure sore on the coccyx

 The pressure sore is from the initial fall. A patent leather belt applied pressure on his tail-bone. The skin has been continually breaking down, from a lack of good nutrition, and from sliding him on the bed and sheets. He has to be turned and repositioned every 2 hours to keep his blood and bowels circulating. The sore is not healing  because of  where it is located on his tail-bone. This puts him at high risk of a blood infection. The wound is so deep, I can see nerves, muscle, and bone. It is a catch 22, the sore is keeping him from continuing physical therapy, and  the surgery will also keep him from physical therapy. He will have to lay flat in bed with only bed baths for at least 6 weeks. I am really concerned about this lack of movement. It is imperative that he activates his trunk, hip and leg area to connect with his brain to build new neuro pathways to help him initiate movement. I fear that he will develop a dependency on his caregivers.

     COLOSTOMY

3/23/12 X marks the spot

I am not to happy about him getting a colostomy. This will lay him up and weaken his already weak abdomen. The doctor will be sewing up the pressure sore, a procedure called, a skin flap. The doctor wants to protect his work, so he insists on the colostomy, which is essential for healing. They replaced his feeding tube also. His hand is still contracted. The dots on his stomach are where they were going to pull out his intestines for placement of the stoma, I asked if they could go lower. We compromised where the "X" marks the spot. They said it can be reversed, but they also said that it would improve the quality of his life. I am not quite sure about that one. He is not paralyzed and it is to soon to tell what progress he will be making.

3/23/13 Awaiting surgery

He is looking so cute in his blue bonnet awaiting surgery to sew up the pressure sore, get a  colostomy, and replace the feeding tube.  The doctor said he is to lay flat in a special bed for at least 6 weeks, so as not to rupture the stitches.

                                                     THUNDERBIRD HOSPITAL

3/24/12 after surgery 

Recuperating after the surgery as his sister lays by his side.

3/25/12 signs of life

As AJ awakens from the surgery, reflections of crosses are surrounding him through this image. The unseen and forever reassuring signs of hope! I see them everywhere and they remind me that he is in God's hands.  Thank you Lord!

4/6/12 stitches from the skin flap

 The surgery went well. His bowels are flowing through the stoma. AJ's reaction to the stoma as he looked down on it, was that he thought he was dying. I reassured him that this wasn't so. No telling what he was thinking to see his guts hanging out from his stomach.

4/25/12 skin flap broke open

AJ is to lay flat for up to 6 weeks. From a lack of good nutrition, he is having problems healing. The 6 weeks recovery process turned into 3 months.

PROM NIGHT AT LOS HACIENDA

5/2012? Prom night

 AJ was nominated king, but couldn't attend because he is to lay flat in bed and is still recuperating from the surgery. We decided to let him get dressed up for the occasion anyway while he stayed in bed.

His sister is getting him ready for the prom. He is swimming in his pants. He has lost so much weight and has no leg or arm movement, only his head, eyes and mouth.

4/19/12
Prom night, quite an event. they got tuxedos for all the residents. AJ didn't get a tux because he was in the hospital. I still got him dressed in his black pants and shirt. He smiled when he seen his clothes. I attended the prom dressed up. I need to put into words what I experienced:

 The family's that I hadn't seen or met showed up for the event. I could tell they were familiar with the Prom. I can only imagine that they have been through this much longer than myself and have come to accept the inevitable affects on their loved ones. Sometimes I reflect and wonder why I am here with all these families. The Dr and his family showed up, a beautiful family and they are all so tiny. The doctor was in charge of the bubble machine and it was so cute to see his little boy with all the bubbles attached to his head because he had some kind of gel in his hair that attracted the bubbles. I wish I had my camera, but I don't think I can break out with the granddaddy camera. This is sensitive territory with all the kids with defects having fun. Some were oblivious as to what was happening, others moved what limbs they could to the music. The kitchen guy who has down syndrome broke out with some moves and was gyrating to Michael Jackson really coming out of himself. I think of myself and how it takes everything I have to come out of myself, and these kids have no fear or intimidation to perform. This is there home.

There was a beautiful cake made my the human resource lady and her mom. The cake was like 5 tiers, a full buffet, and a DJ. It reminded me of D-St. I hung out with AJ in his room.  He didn't win the title of King. I couldn't help but wonder how AJ would take this event. He is becoming more aware of his surroundings, and I know the wheelchair bothers him. Katie, one of my favorite nurses showed up looking hot. I met Rose Bennet and her son, Ethan. I got a chance to talk to her about The Hyperbaric Chamber. She said her son, a victim of a near drowning, went into the chamber as soon as he could. Ethan was in and out of the hospital for over the next year and he couldn't go back into the chamber until after a year. she said it is best to do it ASAP and she gives the chamber credit for her son being able to track now and being somewhat responsive. She said it is expensive and told me of a non profit, I assume it is her non profit, that is just getting off the ground and can help. It is 40 visits in the chamber at 200 a piece, which can get really expensive. She said he could be transported right from Hacienda. She said the non profit was Breath for Life. I looked it up but couldn't find it. I will ask again this summer. Right now I have to concentrate on finishing up my school work and besides Aj is still laid up in bed as his wounds heal.

4/12/12
Laughing is going to help strengthen his vocal chords. So, it is my job to make him laugh. Today, while he was laughing his vocal chords came together and he made a sound!

4/19/12 visit with Teresa, his other mom.

4/19/12 Happy to have visitors

5/14/12 Able to get up 3x's a day for an hour

5/10/12 Sleepy

5/25/12 Rock On!

5/25/12 Hanging out with his sister listening to Lil Wayne

5/25/12 Still in bed

AJ has such a good attitude. It is this attitude that will get him through this. He is becoming dependent on his caregivers. This is becoming a learned condition from so many having to care for his dependent needs. We pass the time with visits, peeks in the mirror, listening to music, watching TV, flash cards, with new hand and mouth movements. He can move his lips, and I can read his lips. He said I am f.... crazy!

5/26/12
Still on tube feeding 105cc and 126lbs.


5/30/12
Karen, another one of my favorite nurses, a true angel got the Speech therapist to start him on a mechanical diet. AJ is eating! His first meal was a hamburger and zuchinni. He choked on the zuchinni, probably because he didn't like it! This is going to make all the differene in the world in the healing process of the pressure sore. Some healthy good nutrition for his skin, mind, and weight.

Family Fills in the Gaps

2/11/12 Pledge of Allegiance....one night his sister opened his constricted hand and placed it on his chest and jokingly said the pledge of allegiance, only to see AJ reciting it along with his sister. He is showing signs of cognition.

2/11/12 Pledge of Alligence

3/12/12 Eating....despite the failed barium swallow test, we continue the tongue exercises with ice cream. We sneak off to the Angel House, which is a one bedroom apt reserved for people like me who come from out of town to visit their loved ones. In the Angel House we have privacy and room to spend special time together; like in a regular home environment. His grandpa cuts his hair and I feed him ice cream, but not the crust. He wants the entire ice cream, but first we have to do tongue exercises to strengthen his throat muscles to get a stronger swallow.

3/12/12 tongue exercises to strengthen his swallow

Watching movies.....He loves a funny movie. We can catch him using his vocal chords when he laughs....so it is our job to make him laugh to help strengthen his vocal chords. We all gather around in his room in geri chairs and put on a funny movie.

movie night with his sisters

3/2/12 Therapy in bed...AJ's right arm extends up and his left arm extends down with limited movement in his left arm which is unfortunate because he is left handed. The idea behind allowing him to hold both his right and left hand is to make a connection with his brain to move both arms and hands up and relax to go down.

3/16/12 Shopping at Ross....AJ loved shopping at Ross before the accident, so I wanted to give him some kind of normalcy in his life....so we went shopping at Ross. I told him I know you can pick out your clothes, blink, smile, point with your head, whatever, and he did. He picked out his own clothes.

First, I held up a collard shirt that I was sure was not his style and he smiled. I said, "Your smiling, do you like this shirt and want it?" he stared at the shirt for a while and his head went from side to side and then lipped the word "no."  I then held up a black shirt with skeletons on it, and asked him if he wanted this shirt, to test him to see if he really understood the concept of picking out his own shirt. He hesitated and seemed embarrassed to let me know that he wanted this shirt and that he liked it...he paused, then his head went from side to side and he lipped the word "yes"....it was on, shopping had commenced.....then his friend, who is like a sister to him showed up with her kids. He hadn't met the baby yet, but he recognized them....and he cried, really cried for the first time. It was a wonderful day out shopping with old friends

3/16/12 transported to Ross

Met up with his friends at Ross

It was a good day!

Therapy 1/05/2012

1/4/12 

AJ's first day at an outpatient rehab, SWAN. Six- 3hr sessions. today was an assessment. He did really well. Speech; he cooperated with tongue movement and head nods toward objects he recognizes. Our homework is to work on oo, pucker, and ee and sticking his tongue out more. OT sat him up. He has more head strength and more range of motion when sitting up. He showed some hand strength. PT just contracted and needs boots will send assessment to Hacienda so we can all get on the same page. Continue with range of motion and boots 6hr on daily. sores on feet. leg and coccyx are better, Cocccyx is still bad and drop foot is developing, his hands are a little more relaxed. Still has good attitude and trying hard.

I played a voice mail where I had recorded of his voice. He recognized his voice, listened, then smiled. He also recognizes Eminem, and gets a kick out of Crystal, his sister. Crystal is his speech therapist, I am his PT, and his Grandma is his OT.

Dr. Thompson said that, "The ability for AJ to see straight, track, and process information requires a very complicated process within the brain, and takes 3 nerves in the brain to do accomplish this and AJ has shown that he can do this. Now we just have to work his mid-brain and make new paths.

January 5, 2012

First visit with the speech therapist at SWAN.

 I was amazed that he was attempting to follow her commands by pointing with his head to the correct category. This was the first time that I realized that he understands even more and is trying to communicate. With the way the health care (Medicaid)  is set up, he is only allowed 15 visits per year with a therapist. These visits are to be split up between speech, physical therapy, and occupational therapy. I cannot believe that any insurance company can put a time-line on a persons recovery.

OT



PT

1/27/12 He stands for the first time

January 2012 The therapy is working. This idea of standing him is to make a connection with his brain and his legs to activate movement. He hasn't stood on them since the accident, lying completely flat with limited range of motion due to his injury on the left leg. Every time a therapist tried to move his leg, it would start bleeding. His leg is healed and it is time to stand. He is full assist in getting up, and has no balance...but he is up! The first time he stood he passed out, but Kay got him right back up once his blood pressure was stabilized.

In no time after standing him, his leg began to move when I asked him to move it.
 It looks like a jerky reflex, but we will take anything at this time.

 

 1/28/12 His right leg moves for the first time

1/26/12 Sits in a wheelchair for the first time

1/5/12 He can barely hold up his head

2/2/12 AJ stands with assistance and tries to bite his therapist on the way up :)

3/1/12 With his physical therapist

Insurance allowed him 15 therapy visits;occupational, physical and speech in an outpatient treatment center called SWAN. They are affiliated with Barrows Neurological Inst. and treat damaged motor skills through Neuroplacisity.

"Neuroplacisity is the ability to change its structure and function in response to experience. Even when the brain suffers a trauma late in life, it can rezone itself. If a stroke knocks out the motor cortex that moves the right arm or in AJ's case his left arm, a new technique called constraint-induced movement therapy can coax next-door regions to take over the function of the damaged area. The brain can be rewired."

His leg wounds from the faciotomy are healed. He has lost so much weight from the pancreatitis problem and lost a lot of tone in his muscle. Also, he displays rigidity and atrophy in his muscles. I had to get him up right away to get some of his strength and tone back despite the wound vac, weakness, and loss of weight. He has been carrying  around the wound vac during therapy. The wound vac is to treat the pressure sore on his tail bone which is not healing.

 

2/9/12 Barium swallow test

He can barely hold his head up for the Barium swallow test. They gave him different consistencies of liquids, puddings, and crackers laced with iodine. Then as he swallows, consecutive ex-rays are taken to see if he can swallow without aspirating. They want to be sure the food is going down the right pipe. Up until now, the family has been feeding him pudding for a few months (against doctors orders). We were leaving the more solid consistencies to the experts, just in case he did choke and aspirate on the food.

Unfortunately, the doctor was not happy with the results of the barium test and feared that he did not have enough muscle strength in his throat to swallow completely.....so still no food and all nutrients would still be fed through a tube to his stomach. I thought they were just being to cautious. My argument was, how is he going to strengthen the throat muscles if he doesn't use these muscles....so the family will continue to sneak in pudding to feed him in the room.

2011 Thanksgiving Christmas

11/20/11 I just got off work and received a call that AJ needed to go back to the hospital. His heart rate was elevated, he had a temperature, and started vomiting again. They thought he might have gall stones. Come to find out his pancreas was swollen. His feeding tube was discontinued until his pancreas and stomach could calm down....in one week he dropped to 80lbs. He trach was replaced with a smaller tube and something miraculous happened.

 11/29/11 AJ opens his mouth, trys to communicate, and starts breathing through his mouth. His entire body relaxed. Up until now he had been clamped down and refused to open his mouth. Some say it may of been a way to protect himself. He had so many tubes shoved down his throat and then the trauma he suffered at the nursing home when the oral care brush broke in his mouth. He was refusing to let anyone into his mouth and all breaths of life were from his throat through the trach tube.  The only way we could brush his teeth was to sneak a mouth guard into his mouth when he yawned, otherwise he would bite down on anything put into his mouth and not open back up. 

11/30/11 He is trying to communicate, he moves his lips but no words would come out. He answers questions correctly with a subtle nod of his head for no. He tries the blinking, once for yes, twice for no, but we all get confused on this one...is it once for yes or is it twice.....the thing is, is that he is trying to communicate and says "hi" to his sister.

12/10/11 Christmas at the Hacienda, he lost so much weight. The doctor let me take out his trach....I am so grateful that he is alive this Christmas.

 

I had to work over the holidays, but I knew he was in good hands at the Hacienda. When I had heard that all these police in uniform had showed up to pamper the residents with manicures and toys, I had to laugh at the thought of what might be going through AJ's mind when all the police arrived....he probably thought he was being arrested...lol

12/10/12 Out of the blue he started counting on his fingers and WE GOT A THUMBS UP....the really cool thing about this, is that he is trying to figure out how to get his thumb up. His thumb muscle is contracted and has no movement.

Hacienda 11/09/2011

I see you!...by Brenda Warner

AJ found a home where people really care and believe. There is a growing need for long term care for children and young adults. The average age at The Hacienda is 16 years of age. Here children can get the kind of sensory stimulation that they need to improve the quality of their lives, other than what a nursing home for the elderly cannot provide for them. These children have not lived full lives and still see you and have a right to see the world also. they laugh, smile, and feel.

This is a picture of a large mural that was donated to the facility that hangs in an open atrium.

AJ has me, his grandma and  his sisters. What I have found is that so many children are not so fortunate. The Hacienda told me, 'I am family now' because I spend so much time there now. I found a new home also.

11/9/11 Here at the Hacienda they will get him up to shower everyday...the CNA's are amazing! While in the shower, a man named Jeffery came to fit him for a splint on his hand. Jeffery asked him to open his hand, and for the first time he responded to a stranger. I asked Jeffery to please document this response because the doctors look at me crazy when I tell them that he is responding. 

 

11/19/11 

11/19/11 AJ finally laughed and smiled at our crazy antics....it surprised us all. He was being weened off his ventilator. When they capped his trach, he panicked and started hyper-ventilating. I began imitating him and did not realize that he was listening to every word I was saying. When I started breathing in and out the way he was, and he seen and heard me imitate him, he started laughing and I snapped this picture.

 

11/19/11 AJ laughs at his sisters joke!

11/19/11 He has a real connection with his sister. This is a special moment not just seeing AJ enjoy our company, but to see his sister tell this joke....my kids cease to amaze me....they are so precious.

 You see, I believe in miracles! AJ's sister is a leukemia survivor!

11/20/11  He is ill and taken to ER

 11/20/11 We are not sure why he keeps sweating. It could be withdrawals from all the medication they are taking him off of. It could be that he is unable to control his body temperature and that this part of his brain has been damaged. He cannot tell us if he hurts or is in pain, so we are clueless. His temperature runs high, then he just couldn't keep anything down, so he was taken to the ER.

I receive a call from the nursing home just as I returned back to New Mexico. AJ has been hospitalized. I am at a loss, I live 500miles from the nursing home. I am tired from driving all night, then working. When I left he was laughing and smiling!..........I prayed!

 

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.....