From Deaths Door to Opening Your Own Door, written by: C.Dianne Lieber © 2007

From Deaths Door to Opening Your Own Door

Sept 21 will forever be a day that has pause. It’s a parent’s worst nightmare; you wake up to a phone call from a stranger’s voice. They speak softly, yet have sternness to their voice. “Your son has been in an accident, he is stable but it doesn’t look good, he may not live through the day.” You hear every word, but now you are numb to the sound they are making. As you place the receiver down you think you might have just dreamed what you had just heard. Frantically you place a few telephone calls to close family to give them the same information, all the while still in a fog about what is going on around you.

This was my journey for 54 days:

They called it TBI (traumatic brain injury). What they don’t tell you is all about the factors involved with it. Hospital case workers are great to hand you all kinds of reading material on something so intense that you think they are joking. Every paper I was handed said the same thing other than a few variations. Then one day I finally got a real doctor that said DAI (diffuse axonal injury), I went to a computer and looked that up and read all about it. Then it all made sence, DAI was what happened, the TBI was the result of the DAI. My son had crashed on his motorcycle and was thrown 125 feet and then had landed on his head. The whole left side of his body was injured. It was told to me in the aspect of shaken baby syndrome, only it had happened in an adult. The heavy blow to his head shook up everything inside. There wasn’t one bruise, there were many, and there wasn’t one bleeder, they were all over. His head was four times larger than normal. He was in a coma for 5 days, with a ventilator helping him breathe. His head looked 4 sizes larger than normal. I asked the doctor’s to tell me everything regarding his injuries, and so they began. C1 and C2 fracture, pulled ligament to neck, shattered eye socket, broken collar bone, scapula fracture, collapsed lung, left hand cuts to knuckle area that went through tendons, 3 broken ribs, and knee injury. He was fighting for his life. As I entered ICU, I saw a man I knew (my son), but he wasn’t looking the same. Every kind of tube, hose or apparatuses was on the thin tall figure of my son lying on a white sheet of a hospital bed. His hands were swollen, yet I took his right hand into mine. I looked at my son and softly said, ‘Mama is here son’, you are going to be just fine. I leaned over and slowly whispered into his ear, I love you with all my heart. I was told by a victims advocate that there was a female on his bike. I asked them how is she and a voice said, that she did not survive the accident. My heart sank, as there was a sadness unknown to me. I looked back over to my son’s face and all focus was now on a boy who had been brought to the hospital barely alive. They told me he had laid out in a corn field for 6 ½ hours until a farmer found the scene. Every word I heard was muffled by the intense pain I had in my heart. I just wanted my son to open his eyes and look at me. I knew he could not talk, as they had already told me that the ventilator would not allow that right now. His eyes were so swollen that he looked like he had been in a fight, rather than a crash. Nine stitches to his left eye area and a cut to the teardrop area. An orthopedic surgeon was on their way to sew up his hand area.

Family members were talking around the bedside, but all I recall is still holding onto his hand. I didn’t want to let go. I just kept softly saying, ‘Mama is here and everything will be okay. I won’t leave you.’

A Silent Pause – my twenty eight year old son was sleeping. written by: C. Dianne Lieber © 2007

Chapter 2.)

A Silent Pause – my twenty eight year old son was sleeping.

The hardest part of hearing that someone is in a coma, is the fear they won’t wake up, which then becomes front and center to all thoughts. For me, knowing my son was in a coma was a shock. I watched him lay in bed so still and he had the look of being in a deep sleep. No one can say how long one is to be asleep or when they might awake, so looking at my son resting peacefully didn’t reassure me that everything was okay. The first day was the hardest in respect to just looking at all his injuries.

By the second day I had resolved to accept his injuries, but with caution. As I entered ICU the next day, I went right over to the side of the hospital bed and took a hold of his hand once again. A warm feeling of skin was all I had. It was hard for me to reach over the rails of the bed as the bed seemed to be higher than I was, so I had to almost stand on my tip toes to reach a level where I could see him. The neck collar that the paramedics placed on him was of hard plastic and seemed to engulf his whole neck and chin. There was a temporary trachea hole in the neck area, where a plastic tube was hooked up to a ventilator to help him breathe. It took every muscle in my legs to pull myself where I could bend over to give him a kiss on his cheek. His head was so large from the swelling that it looked like someone had blown his head up like a balloon. I reached the right ear area and softly whispered into his ear, ‘Good morning son, it’s Mama.’ ‘You are going to be just fine; you just need to wake up sweetie.’ I recall saying each morning, the same thing; “it’s time to wake up now son.” The words were futile, but I felt he heard me. The only sound in the room was the roar from the ventilator. Nurses came in to check vitals, look at monitors and access. There was a cream substance all over my son’s forehead; it was to help heal the road rash that had damaged that area. His entire left side had sustained the injuries. There was a large indentation to his left cheek and ear area, from a corn stalk that he had laid on for hours. It was hard for me to stand on the left side of the hospital bed area, as it was just too much to see and deal with it.

The coma continued for hours, then for days. I prayed and prayed to have him wake up, just to wake up and look at me. I wanted to see his beautiful dark brown eyes again. The eyes were swollen shut, the left eye area had 9 stitches and he suffered from a broken eye socket. I didn’t know if he could see or even when he would see again. They manually opened his eyes to clean the area of matter that oozed out. I stood on my feet next to his bed for a long time during the days; everything that the nurses did had me in disbelief. Why, was my son in this condition? Why, did this have to happen to him? Why, why why? My heart ached, my soul was empty and it had only been three days. I wanted him to wake up and he still would not. I wanted him to say something to me, but there was nothing. I, the only person that stood there for hours wondering about everything, didn’t know what the next phase of all this would be. I took it hour by hour; there was no day-to-day like others speak of. Each hour was unfolding something new. A new line was attached to some other line, the bag for his collapsed lung had to be changed, same with the catheter bag. There were syringes being pushed into a lead line of his arm regularly.

While I looked upon my son’s face and thought back to when he was a young boy, I could recall only the good times. The times he had played baseball, he was so good at pitching, probably could have gone to one of the big leagues if our small town back then had scouting agents. I thought of his first bike ride and how he had loved to play with his brothers in the back yard. Then I recalled the time he went to the prom, and how proud I was of him standing in the living room with a deep black full tux adorning his body. He absolutely glowed with excitement as he held onto his date. Then came the first truck he bought, a bright red older truck he spent hours fixing up. I kept seeing him standing in the White River casting out his fishing line and snagging a beautiful rainbow trout and then giving a grin. Memories of this childhood went into a grown young man who now was fighting for his life. A life he never knew would be like this. One day he was driving down a road and sees a female who needed a helping hand, the next minute he was lying in a hospital bed in a coma. Why? Where was someone else’s helping hand on that road that day? Where was another kind helping soul to aid ‘a damsel in distress, other than my son being a saint? So many why’s to so many things, but as the hours passed by, my only thought was for him to please wake up. I could handle anything, if he would just wake up.

Day 4, still in the coma and now the nurse’s said that he had to go into the operating room to have the temporary trachea taken out and have a regular one inserted. Not only that, but now he needed a feeding tube inserted into his stomach, to help him get food. I signed the release form for surgery and waited. Each hour I keep thinking to myself, this must be a dream, a very bad dream and I will wake up. The sound of the doctor’s voice jarred me from my thinking state back into reality. The surgery went well, but still my son was not awake, now he was heavily sedated on morphine and sleeping even more. They wheeled him back to ICU, to a room that would be ‘his’ room for 21 days. I sat and waited, I stood at his bedside, when everyone left to go to dinner or back home; I stayed right in the room. I couldn’t leave, I was motionless, just trying to understand what this was all about and the reasoning behind the ache I still had in my heart. Yes, my son was alive, but for how long? I remember leaving his room for the night and walking through the long waiting room to the elevators and still feeling numb. I couldn’t eat, I couldn’t sleep, and all I did was cry. I’d get back into my room at night and fall all apart. Tears rolled down my face and nothing seemed right. Every family member, every friend that talked about the accident wasn’t helping me understand the pain we all were going through. This was my little boy, a grown man that was hurt, in pain and barely alive.

Day 5, I arrive early and stand beside the rail of his bed as I had been for the past 4 days. I reached over the rail and took his hand into mine and said, “Good morning son.” He opened one eye to a squint and I felt him squeeze my hand. I was overwhelmed with joy. I said, “Tyrrell, can you hear Mama?” He squeezed my hand again. I felt new tears falling down my face, but didn’t stop to wipe them away, as all I could do was to smile and hold even tighter to his hand. I leaned over again and said, ‘Tye, it’s Mama and I love you very much.’ I didn’t want to upset him in anyway, as he wasn’t moving, and he wasn’t talking, because he had a ventilator in his throat and still couldn’t move. He had woken up out of the coma, after 5 days. Everything else was the same; the injuries had not looked any differently to me. His forehead was terrible looking, as the cream that they smear on is for burn patients and after it sets for a few minutes, it bubbles up like if you had just poured hydrogen peroxide over a fresh cut. A surgeon had come to his bedside and stitched up the left hand area that had deep lacerations into the tendons. Now, there was a bigger bandage covering the left hand. He slept some more, but now I had a slight feeling of relief that he had woken from the coma and was just sleeping. I recall asking, ‘can he go back into the coma?’ I didn’t want him to slip back into the unknown, as I couldn’t have taken that. For now, for this one day I saw that he had opened his eye to me and he knew I was there. Every family member came, held and said the same thing, ‘you’re going to be just fine Tye’. Somehow for me, I had it in my mind at that moment to never leave his side.

For 5 days there was a silent pause to my son’s life. There was a time in there that he wasn’t with the living world as we know it, he was sleeping, but what he saw, felt, heard or experienced in his silent period, only he would know. The first week was draining; everyone had emotions that overflowed into different personalities. I was to be the strong one, the one that took hold and kept the family together, because after all I had three other sons. What were they going through, what was their take on all this drama? One fell all apart and cried and cried at Tye’s bedside. One poured out his tears quietly while others (he thought) weren’t watching. One took on a whole new personality that I had not seen before. Each was grieving and struggling with their feelings in their own way. The first 5 days were the hardest, yet there were many more to come. The roads journey had just begun and I had no idea to what degree I would have to put my faith and trust to the ultimate test. There was a Chaplin that sat with the family the first night, who tried to console and comfort everyone involved. The words he spoke, again were muffled by the pain in my heart. I was angry, hurt and emotionally drained, but I sat and listened to every word from the Chaplin. We prayed, we talked, we cried, but nothing seemed to help. I would leave the waiting room only to return to Tye’s bedside, just to check and see how he was. Didn’t matter that he was resting, I just wanted to be with him. He was a survivor, or he wouldn’t have made it through the 6 ½ hours lying in a cold corn field. He would have to fight for his life, he was strong and healthy, but it would be quit a battle of strength on his part to conquer this blow.

The Awakening has its struggles: the story continues

The Awakening has its struggles, written by: C.Dianne Lieber © 2007

Chapter 3.) Part I

What follows upon waking up from a coma is very interesting.  Awake, but confused.  Beginning a new week, each day I continued to speak my son’s name, in hope that he would open his eyes for longer periods. Seems a Mother knows just what to say to get the attention of her child. Calling out his full name – Tyrrell James – had an effect on him.  It was as if he was a small boy again and whenever I called out and combined his first and middle name, he would know I meant business. Abruptly, he would open the ‘good’ eye (the eye that didn’t have stitches), ever so slightly. Each time I softly called out his name, he would briefly raise the good eye then slowly close the eye.  The eye opening gave me just enough time to see my son and to know it truly was him.

This week I was told about my son’s pulmonary embolism ‘blood clots’ in his legs that had traveled to his lungs. The collapsed lung was still draining, the three broken ribs still healing, but the clots now were a worry. Blood thinning medicine of Warfarin (Coumadin) and stomach shots of Luvenox were given each day. The stomach feeding tube had 6 stitches holding the clear plastic top that lay onto his stomach area, then a large heavier plastic tube went from a hole in the plastic down into his stomach, right above the belly button area. Tye was constantly reaching to feel the area at the feeding tube mark. His right hand was fine, it played a big part in everything he felt. The stitches looked like Frankenstein’s handy work, so he would feel the stitches and I would tell him, “No honey, don’t do that – don’t touch where you hurt.” He would pull at the catheter and reach for the bandage of his left hand to feel that area as well. With closed eyes, his new world was unknown, yet real enough to feel. Heavily sedated on morphine, an antibiotic, blood thinners and bags hanging from poles, I remember looking around the bed area and thinking, could they get any more stuff onto my son. Monitors would light up and you could read the vitals as much as you were educated to do so.

He sleeps a lot, but I stay near. He moves his legs all around. Being 6’2 and not even really fitting in a hospital bed made for 5’0 people, he had to move around to stretch his muscles. The pain from his clots must have been bad, and he would stretch his legs out so hard to the end of the bed frame. I knew he was uncomfortable. This new week brought more pain and discomfort, but Tye was a fighter. He had been in excellent health before the accident. He wasn’t a heavy drinker; oh he’d have a couple of beers on a Sunday to watch the football game, but nothing stronger, as he was tested all the time at work. He wasn’t a smoker and for that I was thankful. He looked tall and skinny lying in the hospital bed, but of good health. His good health had to play a big part in any recovery.

It had only been two days when one morning, (as I walked into ICU), they were inserting a ‘picc’ line into his left arm. When I asked why, the hospital staff replied, he had pulled out the stomach feed tube. I was alarmed, but not shocked. There was a small white gauze bandage on the hole where the stomach tube used to be. Now in his arm was a whole new set of lines. The picc line would allow all medicines, saline, (for not getting dehydrated) and food to be inserted into one line going into his body. What they didn’t tell me for many days, was that when he pulled out the stomach feed tube, it set up an infection.  More antibiotics had to be given now. Clear plastic straps that were attached to his arms and legs were fastened to the edge of the bed rails. This was to help prevent any future pulling out of any medical lines or to help him to not fall out of bed. My heart was breaking each day that I saw my son lying in bed looking so helpless, hurt, and in pain. The swelling wasn’t going down and a yellow tone was coming over his whole body. They wrapped large inflatable bags around each leg to help with the clots, but when they took the bags off is when I saw more of his motorcycle injuries. The left knee looked terrible, but they just kept adding the burn cream onto that area. Both legs to the top area had long bright red markings and were bruised from just below the knee area clear down to his ankles. He even had bruises on his toes. Every area on his body was either swollen or bruised. He didn’t talk, he didn’t smile, and there was no communication other than a squeeze from his hand. He looked as if he was in a vegetative state, yet he would move his legs and arm.

The family came, saw and went home. Everyone by now had to get back to their jobs and their life, everyone but me. When my son’s life stopped, so did mine. I can remember family speaking to me of back home, (my house), and I couldn’t recall what it even looked like. I felt like I was in a time warp that had everything standing still. Nothing mattered, not home, not my dog and birds at home, nothing. Nothing but my boy laying in that bed in ICU who was still fighting for his life. There would be even more stress that would be accompanied with this tragedy and it would be the stress that comes from family and friends. The unbelievable comments, opinions and remarks from family and friends during a period of trauma. We were each traumatized and we all became affected in different ways. Each one in the waiting room took their turn at finding new ways to add even more stress to a situation already overflowing the brim.

Its amazing how one person’s life can affect so many. For some it was a positive time, and a learning experience for them to change their own life style. For others it became a time of past unresolved issues that were irrelevant. I recall looking around at all the people and watching their faces, I’m a good observer anyway, so viewing everyone’s reaction was interesting. Many tears were wept, but along with the tears was anger and frustration. Everyone had their version of the accident and what had happened, yet no one really had the right answers. Everyone assumed things which would later turn out to be incorrect. The 6 ½ hours of Tye lying in a corn field was bothering me. I felt I wanted, no needed, to go see what my son saw as he lay in a farmer’s field all night. What must he have thought while laying there beneath the sky and with the stars above him. Did he see anything, hear anything? Why didn’t anyone stop during the night? Why? Why? Why? Again so many why’s. I was having emotions unfold inside of me and I didn’t know how to deal with the questioning in my mind. My thoughts overflowed onto paper at the end of each day, but after writing my feelings down on paper, I wasn’t getting any answers. This was the worst thing that any person, any family could go through and we wanted answers. What was my son doing in this foreign place?  What happened out in the darkness of that night on Eastern Colorado country roads that had left him with terrific injuries fighting to still have a pulse at daybreak?  How did he stay alive one more day?

There was an afternoon that Tye moved his mouth trying to speak, but the heavy ventilator tube (size 6) was restricting any sound. I could understand “I Love You” from his lips and this gave me joy. I told him a thousand times that I loved him and that he would be ok. He tried to say something to me, but no one could hear or read lips well enough to understand him. The nurses were abrupt in yelling out, “You are in a hospital in ICU and you had a motorcycle accident”. Every time a nurse would say those words my heart sank. I didn’t know if even hearing the word ‘motorcycle’ would upset him.

Hospital staff (at this particular hospital) was also interesting to observe. There wasn’t one doctor in 6 days that came up to me, (the patient’s Mother), and told me anything at all. Any and all information was only from all the ‘nurses’ in the ICU unit. Under duress, I had to deal with hospital staff’s in competencies.  I wouldn’t know to what degree of the in competencies until the days continued on. I lost my Mother 2 years ago in Oct. All of my family went their own way and lived their lives apart. Now there was a tragedy in the family that was very serious. Do you pick up the phone and call members of the family you haven’t spoken to in 2 years? I was totally focusing on the current family tragedy, my son’s life.  Coming from of a small town in Northwest Colorado, word travels fast, so everyone was notified about my son’s acute physical condition without me doing a thing. I got a call from my sister that lived three states away from me. Nothing but the topic at hand was discussed and for that I was thankful again. I’m not a person that dwells on the past, so I didn’t want to hear anything of the past during this time. People made flight plans, drove 913 miles all to get to a farm town hospital to see for themselves the horrific physical condition of “Tye”.

I took a deep breath and walked my sister to my son’s ICU room. I had already told her of his injuries and I hoped that she could handle seeing him in this condition. It had been 2 years at my Mother’s funeral that she had seen him last. Approaching the bedside we both cried. There lay a young man that looked pale and needed a ventilator to help him breathe. The bruising was more pronounced and his forehead looked worse. His head swelling was starting to subside, but he still looked bad. He lay still and yet he did squeeze my sister’s hand. He knew the people that came to see him, by the touch and feel of their hand in his and by the sound of their voice. We assumed, he was just coming out of a coma.

The story told to us was that my son wasn’t to live through the night, nor upon hours after arriving to the hospital, yet he did. He survived for 6 ½ hours in a dark cold corn field all broken up. He made it through the surgery of having a ventilator and stomach tube inserted into him. He had everything going wrong, the pulling of the stomach tube had now set up an infection and more antibiotics had to be administered, yet one thing was going right; he had a will or something greater than we could explain that was keeping him alive.  Just about the time we could see some light on healing, another death call comes upon him.

The Awakening part II, another death call comes….the story will continue.

The Awakening has its struggles, written by: C. Dianne Lieber © 2007

Chapter 4.) part 2

As if what had happened within the first several hours wasn’t bad enough, as the weeks went by there would be more drama with more traumas. Every day was a struggle for Tye, every hour he experienced more pain and more discomforts. Someone within the hospital management team made the decision to move him from ICU to the 5^th floor for rehabilitation. It all had to do with the treatment and assessment plans as well as insurance payable amounts or the lack of having insurance for extended care.

My son was to be moved to the rehab area of the hospital, as someone felt he wasn’t critical care anymore, yet when looking at the patient he was lying in a vegetative state and on life support. It felt like someone on the management team had given up on my son and was moving him out of ICU to make room for an empty bed. Every hospital has a real problem when it comes to bed availability. Wakening up from being in a coma for 5 days was one thing, being off the ventilator after 9 days was another, but he was far from being able to advance to rehabilitation, at least in my mind. I was in total disbelief that he was ready to be moved to any room other than to a critical care floor.

Early in the afternoon on Sept. 28^th two young men orderlies came into the ICU room and started to move my son to the 5^th floor. They disconnected all oxygen and only had his feeding bag and saline bag attached to the stand next to his bed. In a matter a fact manner, they went rolling my son in his hospital bed down the hallway and out the ICU doors toward the first set of elevators. Both of them appeared to be somewhat in a bit of a hurry.

My sister had joined me and my younger son, as we followed behind the bed that was being wheeled off down the halls. There were only two orderlies pushing my son’s bed and they were going at a rate of speed that made us hurry to follow behind the bed, but I was becoming nervous. Down a hallway, turning corners and still more hall ways they sped through before coming to another elevator. All of us squeezing to fit inside the elevators with the hospital bed, we traveled another flight of floors to the 5th floor destination.

The two orderlies ran the hospital bed into the side of the elevator. I recall speaking out, “Please be careful” in amazement, thinking I’m sure they know my son has brain injuries. The elevator door opens and again the two orderlies bumped the end of the hospital bed into the side of the elevator. I shook my head in disbelief and repeated my first words to them, “Please be careful with my son”. There was no apology; they just kept wheeling the bed faster down the hallways. Still enroute for some hospital room on the 5^th floor, they went flying down hall ways. We all were walking so fast to almost a run to the approaching 5^th floor hallway where the bed finally comes to an abrupt stop just outside a room entrance.

One woman walks from a nurse’s station announcing to the orderlies that she will be lifting my son (6.2 weighing 162 pounds) onto the next hospital regular bed that was inside the 5^th floor room. My youngest son in a loud tone speaks out and asks, ‘Aren’t you going to get a back board?’ They said, “No we won’t need one”. Then my younger son speaks again and says, ’You‘re going to have to get more people to help you lift my brother, than just you.’ By this time the floor nurse is there and can see we are challenging the delivery of a patient to the 5^th floor area. Four people assist in wheeling the hospital bed carrying my traumatic brain injured son into a new room and then they shut the door keeping us out.

I stand outside the 5^th floor door in shock. My sister is raising her voice to the head floor nurse asking questions like “What floor are we on? Is this a critical care unit floor? Where are we in this hospital? Where is staff?” and my youngest son is pacing up and down the floorway of the nurses’ station. Staff was confused by my sisters’ questions, finally acknowledging to her that the hospital didn’t have a critical care floor; thus they weren’t equipped for moving patients from ICU to a step down system. All ICU move to regular rooms or in Tye’s case, he was moved directly to rehab. Things just weren’t operating in a manner we were accustomed to either.

We all couldn’t understand the shutting of the door just to transfer a patient from one bed to another, nor could we understand the transport to the 5^th floor rehabilitation area. We really didn’t grasp that Tye had been moved to an area of the hospital that did not have medical appliances for treating life threatening turn-of-events for immediate care.

What seemed like forever, the door opened and the two orderlies, one nurse and the woman were wheeling the ICU bed out of the room. There, in a regular hospital bed, laid my son. I walked over to him and looked right at his face. I looked closer as I could see this room was well lit from the window mini blinds being opened and I was shocked at what I saw. My son’s lips were blue, he was not getting enough oxygen and he started looking gray. I yelled out, “Um his lips are blue”. To this holler brought the head nurse back into the room. It became very obvious that staff was shuffling duties and trying to figure out why a patient coming from ICU was not responding to the 5^th floor rehabilitation norms and was in breathing arrest. I felt a deep pain in my stomach, my hands were shaking and the room had two more nurses trying to find supplies that weren’t in the room to help a patient.

The 5^th floor rehabilitation therapist stepped in and took a hold of my hand, I felt as though everything was going very bad and no one had any answers. My son wasn’t breathing and they were trying to get oxygen to him, but the level that a tiny machine placed on the window seal only read 54, they wanted the machine to get to 70 before they would move him again. My sister was standing in the hall observing nurses unequipped with medical tools for helping in the crisis, she was loudly asking “where is a Doctor, where is a cardiologist, where is a neurologist?” No one was calling for any physicians; the staff was assisting a breathing therapist with frozen faces showing signs of fear. It became a very serious moment.

Dead Man Not Walking.

Move him back to ICU that is. Again and again I would ask, “What is wrong” and all I got in a reply was that he needed more oxygen. I finally couldn’t take it any longer and with the shocked look on my sister’s face, I knew we were in big trouble. I made a call to my son’s Father and told him, ‘we’re losing him, you better get up here’. He was down stars and trying to make his way to the 5^th floor on the elevator. Pumping oxygen into my son’s trachea was not working, he was still blue. Every ounce of energy I had left in my body was taken over in anger. What was wrong with these people? Why did my son have to be moved so fast from ICU to the 5^th floor and why, the race down the hallways? Did the bumping into the elevators doors edge hurt my son, what was going on? I looked at the head nurse and at this Doctor standing there and my voice rang out, “move my son back to ICU NOW”. They all were nicer to me now and agreed just as soon as he hit the oxygen level they assured me they would move him back. Finally the machine that read 54 got up to the level for transfer. Two nurses’s turned the bed and ran the edge of the hospital bed into the sink cabinet before moving it in the right position to line up with the door entrance. I threw up my hands in disgust and raised my voice again, ‘You people are unbelievable, this is a head trauma patient, what are you thinking?” The hospital bed was moving out of the room’s entrance and down the 5^th floor hallway to the elevator for the ICU. One of the nurses said, “come with me, down the stars it will be faster and we will be right at the elevator doors when your son comes out”. I ran as fast as I could down the stairs and as the doors opened I could see the elevator doors and then the end of hospital bed where my son lay. One nurse was ambu bagging him with air and another was holding onto the pole that carried the feed bag and saline bag. As I glanced over my shoulder I could see my son’s Father standing in the ICU waiting room with a look of surprise on his face. Back into the ICU room my son went again, this time for another life saving treatment. Everyone stands at the edge of the door to look on and hope and pray they save his life again. I was now not only in shock, but utterly mad at the hospital and the staff for putting my son in that danger. It was surreal. It was like we were part of the scenes in the movie “Sicko”.

The whole experience was traumatic for us, but what was it for my son? Had he sustained even more injury now? Did the crashing of the ICU hospital bed into walls, corners and sink cabinets be too much for his fragile brain? My sister upon arriving at the hospital witnessed in competencies of the staff over behavior and know had experienced in competencies in skills and techniques, yet we were on stand by in wondering have they killed him?

Seven days and still no Doctor talking to me, seven days of no communication about the welfare of my son, only bits and pieces from his Father was I allowed being privy to. My emotions were overflowing into outrage. Now I would speak my mind, this hospital had put my son into grave danger and I wanted answers. I stood outside the room and watched everything the ICU attendants were doing to bring my son back to stable condition. It was all too much for my younger son and sister to watch, so they stayed out in the waiting room expressing their thoughts on the terrific horror we all had just seen.

I stood alone as my son’s Father was hearing the version of happenings from our younger son and my sister. I stood waiting and looking on at still each and every nurse that worked on bringing my boy back to the condition he was in before we left for the 5^th floor. My body shook uncontrollably and tears were creeping to the surface of my eye lids. No one was there with me for a few minutes; it was like a darkness I had never seen before. Everything was in slow motion, yet I could hear every word or sound around me. Finally after I stood awhile longer an arm engulfed my shoulder and I looked over to see it was an old ex-brother-in-law. He saw my pain and came to my aid. Something about his compassion made me feel human and then the tears rolled down my face. I started to cry uncontrollably. It seemed I couldn’t stop the stress and upset over the last hour was all coming in a flood of emotions. He held onto me with support and strength. He only spoke a few words, but they were of comfort. “He is going to be ok, he will be ok, came from the voice of support, it’s all I heard. I looked on and then dried my soaked face before entering my son’s room again. I took his hand into mine and kissed the top of his hand as I had been for eight days. I leaned over his bed and whispered into his ear, you are ok son, you’re going to be ok I promise. I am going to get you out of here, if it’s the last thing I do, I promise. You just rest now and know I am right by your side. I felt nothing, but I knew his oxygen level was back to normal and that he was just sleeping.

I’m going to get out of this place, if it’s the last thing I ever do.

I walked out of the ICU door and stood in the main area when there was a new voice that called out my name. It was a case worker that wanted to know if I had any concerns about the way my son was delivered to the 5^th floor. Concerns, I said, I have a complaints. The woman and I along with my son’s Father all went onto a small conference room and sat down at a round table. The case worker pulled out a tablet of paper and asked me to tell her everything that had happened from the time my son left the ICU room. I spoke in a low tone as my voice was shaking I began to tell of every part of the experience three people had just experienced. She never raised her head, she just wrote everything down as fast as I spoke of each and every action. I ended the conversation by stating that my son would not be moved from ICU again. I told this case worker that I had better get a Doctor to speak with me on an everyday basis and that if anything happened to my son; I was holding this hospital responsible. This was clearly gross negligence on the hospital and I wasn’t going to have any more horrific experiences.

Warning them was just enough.

Everything was so noted. Everyone was being nicer, even down to the 5^th floor head nurse coming back over to me and telling me, ‘I just want you to know we would never hurt your son’. My anger was still pronounced, but confined as I walked back into the ICU room to check on my son again. I left strict orders that my son have a sitter in the room at all times, 24 hours a day. Nothing was going to happen to my son again. Not one more near death experience could he or I take. Tye was a fighter yes, but this fight was from negligence on the hospitals part. A hospital that is there to help to save people’s lives, not aid to destroying them.

Late evening was upon us, yet I could not leave my son. An hour and a half wait in the ICU waiting room for shift change, then you could go back into ICU. My sister, and I entered the room and spoke softly to Tye who was sleeping quietly. Everything up to this point was still painful for everyone involved.

It was a miracle, but as we stood beside his bed, one of the 4 doctor’s that assisted my son came into the room. He talked of Tye’s progress and of his struggles. He added these words, ‘this may be as good as it gets’. I remember standing at the edge of the hospital bed and feeling my knees shake. They had never done that before, so I took note of it. I kissed my son good night and we all left the room, while opening the ICU large doors to the waiting room began the flood of tears once more. I couldn’t walk the way I usually did, I was walking but I didn’t recall moving my legs. I sat down onto one of the waiting room chairs and I couldn’t get up. I cried out loud again, still uncontrollably and with a broken heart. My emotions were so out of control, but the words the doctor said were echoing so loudly that I cried harder and louder just to get them out of my thoughts. I was escorted by my sister back to the hospitality house where I fell onto the bed and cried even more. It was a long and painful night. A night I will not forget, I was just told my son might never be the same. I was told this (his condition at this moment) might well be “as good as it gets” for him. I was mortified with deep blows resting upon my soul.

More blows to the awakening will continue in my next journal writings.

More blows to the awakening, written by: C.Dianne Lieber © 2007

Chapter 5.) Part 3

The blood clots in my son’s feet were traveling up his legs and into his lungs. He would need to have an IVC filter surgically put into his body. The doctor put him on heparin to thin the blood. Since I was his medical proxy, I had to go back downstairs and sign another surgical form to have a filter inserted into my son’s body. The filter was to help stop the large blood clots from entering his lungs or brain.

Upon arriving downstairs, a tall man came out into the hallway area to meet me. He showed me exactly what he was going to do during surgery. This was a change in pace, especially from what the other entire doctors were doing, or rather not doing to communicate with the family of a patient. He drew me a diagram of how he would insert the IVC filter and said the surgery wouldn’t take but an hour. He even gave me one of the IVC filters to show my son later on down the road. I waited and as they wheeled his hospital bed out from the surgery door, I took a long death breath. Surely this was the last surgery he would have to endure. He looked so helpless lying there in the hospital bed.

I sat alone, worried and confused. Thoughts of the word “why” were back [front and center] in my mind. The hallway was quiet, no movement from any hospital staff. I was alone, in my own little world of being so far away from my home. My life, as I barely remembered it, was now sitting alone filled with overwhelming feelings of sadness. Having daydreams of being home, I had a life, and I had an online business. Everything had come to a complete stop, because my son’s life had stopped. Both he and I were at a moment in our lives that was going in slow motion. Now, I have often referred to my life being on cruise control, but this was absolutely going at a snail’s pace. The minute hand on every clock I watched was ticking very slowly, even the second hand was pounding in my ear. Once again, I waited and then the doctor came out and said the surgery went fine. He said the filter would remain in Tye’s body forever, as he had tried to remove filters after about 6 months and found them too difficult, and so now he just leaves them in there.

The next couple of days I noticed that Tye was very restless with his legs. He would continue to pull at the catheter line and at the IV line in his arm. There was a white piece of paper that the speech therapist had taped to the front door to his ICU room. It was the Rancho levels. Rancho levels of cognitive functioning are after a traumatic brain injury (TBI) or of a closed head injury (CHI). The Rancho levels go to 10 levels. Recovery usually follows a sequence of stages. Every patient is different in the prediction of how long they will stay in each stage.

Three pages of stapled papers were handed to me, which read.

Level 1: No response to external stimuli, I would hear that word (stimuli) throughout my son’s recovery.

No observable wake sleep cycle, eye opening or purposeful movements.

Level 2: Generalized Response. Signs of arousal emerge. Total assist.

Eye opening. Papillary dilation that occurs spontaneously or in response to noxious stimuli.

Generalized reflexive response to stimuli. Responds to repeated auditory stimuli with increased and decreased activity. Responds to external and internal stimuli with physiological changes.

My son would stay in the Rancho 1 ½ level for 6 days. As he advanced to level 4 – 4 ½ would I see very little change in the overall attention he was gaining.

Level 3: Localized Response: Signs of awareness begin to emerge. Total assist.

Withdrawal of vocalization to painful stimuli. Turns head toward or away from auditory stimuli. Blinks when strong light crosses visual field. Responds to discomfort by pulling tubes or restraints. Inconsistent responses to simple commands.

Level 4: Confused-Agitated. Max assists.

Hyper alert. Performs motor activities, but behavior essentially non purposeful. Aggressive and combative behavior. Perceptive distortions (e.g. delusions and hallucinations). Hypersensitivity to external and internal stimuli. Disturbed wake-sleep cycle.

I handed a second copy of the Rancho levels to my son’s father in the waiting room, but he only glanced at them and set the paper work down on an end table. He never picked them up again. In observing his behavior, I wondered in awe of his resistance to read text for helping to understand our son’s physical status.

For 22 days my son remained at level 4. Rancho levels became a large part of the conversations that both staff and I would be asserting.

Tye layed in a bed for over 3 weeks. He was still in Intensive Care and still struggling for his life. He had a large tube inserted into his neck to help him breath, still no conversations were to happen. He was being fed from a tube and still given all his medication through tubes that were inserted into his arms.

Trying to feel non-threatened by the medical paraphernalia, there still would be many crosses to bear and roads to travel for helping the family heal from the accident. I can recall the evening of October 1^st, my son had so much secretion coming out of the trachea hole that it would pour out of the opening area and down onto his neck and chest. He would cough and almost gag from the heavy build up of the mucus. The nurses were to come in often and clear the secretion by sucking out the mucus with a small vacuum hose that drained into a clear plastic cup. The clear cup was hanging near the head of the bed and looked like yellow thick junk. The evening staff schedule was approaching, so the nurses were leaving the secretion build up for the next nursing staff to care for. This left me so upset and appalled. Here lay a helpless young man struggling to breathe and all the nurses wanted to do was wait until the next shift change to correct any issues. This became a regular event.

The morning surprise:

One morning the nurses put a speaking valve into the trachea hole. The speaking valve was to help me hear him as well as to hear his voice. Thus far, all we could do was try to read his lips as he tried to talk. I recall walking into his room early that morning and there he sat raised up from the hospital bed and looking at me. One of the nurses speaks out, “Say hello to your mother, Tye”. I thought for a second, what is she talking about, he can’t say hello to me, and he can’t even talk yet. All of a sudden he looks at me and his voice rings out, “Hello Mom’. I was shocked, I was surprised, but most of all I was so thankful and grateful to hear that wonderful deep voice of his. The staff hadn’t told me that they had removed his catheter and as I walked over to the right side of his bed, I stood there and took a hold of his hand as I had been doing each morning. I said, “Well good morning son, it is so wonderful to hear your voice again. He then spoke again, saying, “This may sound awkward Mom, but I have to go to the bathroom.” I laughed and replied (not knowing his catheter was removed) “Ok, Tye you go right ahead and go to the bathroom”.

The sitter reached for the plastic urinal cup and held it in place while my son relieved himself. As she held the cup in place, she leaned her head back to me and whispered, “He thinks he’s in a football stadium.” I was alarmed, but not surprised. His voice was slow, but rather clear as he said, ‘I want food and I want to go home’. I looked at him and asked him, “Where’s home”? He looked at my face and replied, “Where do you live?”  The nurse was standing at the foot of his bed and decided to address Tye by asking him if he knew where he was. He replied “At a football stadium at CSU”. The nurse told him where he was and that he had been in a motorcycle accident. He seemed very confused with a still and cold look coming across his face. He then said, “She shouldn’t have told me that like that”. I looked over at the nurse and then back to my son and squeezed his hand and said, “I agree”. The nurse spoke to my son in a hard-toned in her voice and in a way that loaded her words. The conversation quickly was interrupted by the sitter who asked my son if he wanted a shower.

The sitter decided Tye needed a bath, so she asked him to walk to the chair next to his bed. Tye took 4 steps to the chair and sat down in the chair. I noticed that my son’s right foot was completely turned inward toward his left foot as he stepped down and took his first steps to the bath chair. I so noted this in my mind. I wondered if this would be a permanent disability from his injuries. The sitter wheeled the chair into the open shower area and gave my son his first bath. After the bath, he got back into the hospital bed feeling exhausted.

While I was out of the room [during the bath session] I asked if the sitter was watching TV. “While in Tye’s room?” A different nurse said, “Yes”, but she didn’t have the volume turned on”. I asked what she was watching. “A foot ball game,” she replied. Returning to the room I looked again to make sure the white piece of paper with the Rancho levels was still stuck to the window of his door in ICU. The paper was still there, so I read for myself what it had to say, and on the third line it is clearly stated: no TV, Radio, no bright lights, keep the shades down, soft spoken voices. I looked around the room. The window shades were open, the TV. was off, but the bigger light was on in the room. I noticed clearly that the staff was not adhering to the Rancho levels. Alarmed in thoughts, I wanted to know how the activity away from the Rancho level treatments was doing to my son’s brain.

The speech therapist came into the room and gave Tye a swallowing test, which consisted of a blue die. The test is to see if Tye could swallow and be given a soft diet of food. Tye did not pass the test, so this meant he had to stay on the feeding tube for his food nutrition. I looked at the speech therapist and asked her, “Is a football game on TV good for my son at this point?” She looked at me so funny and shook her head, “No absolutely not, it’s too much of an aggressive sport for a rancho level 3 patient, why?” I said, “Well looking around the room. I feel that everything going on in this room is ‘not good’ for a Rancho level patient, if you ask me”. I noted the shades and the lighting, and then I told her what the sitter had done while I was out of the room in respect to watching a football game and that my son thought he was in a football stadium. She was getting upset, I could tell, but as I went on as she said, “I will take care of this right now”. She left the room and when she returned, she had a new Rancho level sheet hung to the window of his room, with a highlighted marker underlining the NO TV and No bright lights. The stimulus was enforced and the sitter got a scolding from the speech therapist.

Mother Knows Best or Becomes A Bedside Cop.

The staff thought it was best that Tye walk when he had bad legs pains, as this would help with the blood clots. So, they gave him a walker and had him walk just out into the ICU area and back to his bed. This was later denied by his doctor who said, “He wanted that to stop, it was a liability”.

By the next afternoon Tye was running a fever of 101, as they gave him Tylenol and more morphine. The stomach feed tube that he had pulled out, now had set up an infection and he went back on antibiotics. The area to the feed hole was red and swollen. He was sleeping more, but still was very restless. The leg pain became more and more pronounced.

Four days into October now and the fever comes and goes. One particular evening, while I was in my son’s room, the staff decided he could sit up in the large recliner chair next to the bed. He liked to sit up. For him the bed was becoming so tiresome. On that particular evening, I was in for another blow. The staff spoke of hallucinations at the level 3 stage, but nothing like what I was about to encounter. I sat right next to Tye while he rested in the recliner chair. I talked to him for a few minutes, when he then started to talk about being in the Iraq war. I replied to him, “You aren’t in the war son”. He truly thought he was. He became angry and upset. His eyes were opened so wide that he looked like a wild man out of control. He was talking very loud and said he was going to get hurt and that it wasn’t right. I tried to think of other things to get his mind off the war topic. I asked him if he remembered going fishing with his Grandpa, he replied yes. When I asked who would you take fishing son, he said Trevor (his brother), then I felt like he was going in the right direction, but when I asked what do you want Trevor to bring fishing with you and he said, his construction box. I looked deep into the eyes of my boy and knew that he still was hallucinating and that the morphine must be contributing to these hallucinations.

I wanted Tye off the morphine, but I knew his pain was intense, so I wasn’t sure what medication they would give him. There really isn’t anything worse to deal with than someone hallucinating. I remember many times the hallucinations from my mother (while I was her caregiver) as she went through being at fifth stage dementia going into the Alzheimer disease. She actually thought a man was standing right in front of her at times. She even would move her eyes across the room as if she was following the imaginary man while stating that he was crossing the room in front of her. Then there were the times that my mother would hear things that no one else did, she would call me up and tell me that there was someone banging on her door in the night, late at night about 3:00 in the morning. Many times I would hear stories from my mother that were hallucinations from a disease that was creeping into her mind. It was the knowledge that she was 80 years old that made me not be alarmed, but seeing and hearing my 28 year old boy going through these same experiences is quite different. It’s scary and unnerving and amplifies feelings of losing a loved one to a mental disease.

Tye had gotten back into his hospital bed and was still complaining of his legs still hurting. They continued to strap his arms and legs down with the restraints. They would alternate the speaking value periodically through the day, in between clearing the secretion. Respiratory came in and gave mist treatments to his trachea area through the hose to break up the secretion, which helped thin the mucus and allowed it to be suctioned out easier. I remember telling my son that if he coughed up the mucus, breathed deeply, the tube would come out of his throat and we could go home. This seemed to ease his emotions and had a calming effect.

The constant questioning of cognitive awareness was ever so often. My son knew colors, he knew that four is after three and he knew that blue was after red, and that red, white and (blue) were the colors of the American flag. He knew my name and his brother’s names. He knew that he had two children and their names, but didn’t know where he was or why he was in a hospital. He didn’t know the location of the town he was in or why. He absolutely didn’t know anything about the accident or why. Some days he would tell people he was in Wyoming, not having any clue to being in Eastern Colorado.

When I asked him, do you remember Aunt Sue Ann coming to see you, he replied no. Do you recall your brother Troy standing by your bedside last night, he replied no. All the short-term memory was clearly not there, for now. He couldn’t tell me what day it was or what month he was in or read the correct time on a clock. I let him sleep, but as I held onto his hand, I talked to him for long hours during the day. My words were soft in trying to reassure him that he was going to be just fine.

It was very difficult to talk about certain subjects, as everything was just a wait and see what my son would or would not remember. Nothing was to be said about his accident, as we had been told by hospital staff that negative words could upset him or set him back from progressing to better health. The doctors said, he could regress and stay there if the stimuli were too great. Stimuli was a word that the medical staff would use over and over again. The only stimuli I was seeing, was that of my son moving his legs all over the bed as he was in pain.

This scenario was becoming a long journey for me. I was overwhelmed by the hospital staff’s behaviors, particularly on how they acted around a patient with acute injuries, which was my son. Every experience I was going through was muffled by the inner emotions I felt. At times, I wanted to scream out. There were moments of anger and rage that I held in my heart, yet I couldn’t share them. I told myself to stay strong, for my son. What if I let my guard down even for a moment, then who would be there for my son? No one, it was my job to help my boy. My life’s work was handed to me in a caretaker role for some reason that was unfolding each hour, but for me this was a time that I didn’t know if I could get through because of all the unfolding events. Everyone told me, that I was strong and I was such a survivor. Well, was a time that I had my doubts. I knew thatI wasn’t taking care of me (the caregiver).

A Bedside Cop needs to eat too.

I wasn’t eating, I wasn’t sleeping and I cried whenever I thought no one was around. I would pour out the tears late at night back in the dungeon of the hospitality houseroom. I’d lay awake for hours thinking of the days events, and going over each one again and again in my mind. This wasn’t healthy for me, but that was what I was going through over and over in my mind. People would say to me, you need time away from the hospital; you need get out in the fresh air. I’d wonder how they thought that was possible in a farm town that reeked of cow manure smells. I was totally alone in a town, a place, an environment so unknown to me, walking out the front doors of the hospital was like walking into a twilight zone for me. As the days continued, I kept writing the events of the day, while thinking that each day could be the final story in my son’s life, due to the many blows to his awakening. So, I would keep writing with the intention that each day my son was given a new day, with many miracles unfolding before my very eyes. As my tears fell from my face onto the sheets of paper that I wrote, the flowing of words helped empower me to make sense of all the chaos.

Until one day when my belly was full and I had had enough….to be continued in my next journal writings – The Cover Up Unfolds.

The Cover Up, written by: C. Dianne Lieber © 2007

Chapter 6.) Part 4

Being on the bottom of the food chain.

The Cover Up…. Part 4 To The Awakening

Being on the bottom of the food chain.

Fifteen days and my son and I still have not left the intensive care unit (ICU). The speaking valve (the nurses stick into my son’s ventilator) is the only way to hear any conversation coming from my boy. The fifth day into October brings a few more surprises and eyebrows rising. Tye starts off telling me that he is hungry, that he wants food. They would have to conduct another swallowing test to determine if he could have any soft food at this point. He still looked weak and had a yellowing to his skin around the area where he had broken his collar bone. Blood pressure was 131/95 pulse was 64; they said his liver enzymes were high and they would like to do an ultra sound to check his gallbladder. They would put a laparoscope in the stomach (surgery) to remove them, if need be. Good grief another surgery and we haven’t even made it out of ICU yet. The luvenox shots to his stomach hurt and he complained of the pain after each shot.

The staff decided to give Tye another swallow test. While doing the test, he gets to eat small bit size portions of chocolate pudding. Slowly, the speech therapist feeds the chocolate pudding, then 3 teaspoons of cranberry juice and 3 teaspoons of water. He is asked to swallow twice after each spoonful. He does, but I can see he is having a delayed response to the command of swallowing twice. He did fairly well at this test, therefore, the speech therapist decided my son could have food that was to be known as mechanical food. Meaning the food wasn’t pureed, but had a consistency of looking like real food and was close enough to a real diet. I asked my son what he would like to eat and he replied steak and eggs. Everyone in the room laughed. What was funny was the way he said it, as he looked at me and opened his eyes up all the way. I ordered a chicken fried steak with white gravy, scrambled eggs, peas and chocolate cake for dessert. When dinner arrived and the tray was set on the bedside table, the speech therapist looked at me and said, “Mom I want you to feed your son”. I couldn’t believe that they had asked me to do this, as here they (the staff) were doing everything, but when it came to feeding him, I got to do it. Well, I must say that I had no objections, as I was thrilled.

As I lifted the cover from the dinner plate, I spoke to my son and said, “Well Tye, here is the closest thing I could get to your steak and eggs on the limited hospital menu, see what you think.” I’ll never forget his eyes opening wide again and it reminded me of a little boy in a candy store gazing at all the different colored candy and wondering which one to choose. Tye hadn’t smiled, nor would he laugh. I tried everything in the fifteen days to get my son to smile. I told funny stories to him; I tried to be funny, but to no avail. The first mouth full of chicken fried steak with gravy was heaven to him. I asked him, how does that taste? He replied, “Not too bad actually.” He thought he was starving, but I had told him that every day he has food going into him, just going in through a tube, not through your mouth.

The nurses took the neck collar off of my son and I recall asking, “Aren’t you going to take an x-ray before you do that?” The nurse replied, “He isn’t complaining of any pain.” He was still on morphine for the pain, heat packs were given to his neck area. His head was tilted so far to the right it looked like he was uncomfortable, but that is the way he was brought into the hospital. That’s the way the neck collar held his neck in a position that looked like he was hurting all the time.

Houston we have a problem, doesn’t anybody listen.

Evenings were difficult, Tye was very tired and in a lot of pain. I would walk back into his room to see that another sitter (who obviously couldn’t read the paper on the door again), and once again I would witness a football game playing on Tye’s TV with no sound. The rules included no visual stimuli, and the sport of football has stimulating images to view. I remember being so upset over the Rancho rules not being followed by staff that I needed to take this matter into my own hands. The young girl (looking as if she was 12 years old) was sitting in a chair in the darkened ICU room of a patient that had a head trauma, watching football. I guess in her mind she thought (well he is sleeping and I’m bored). I went over and turned the TV off and bent down to talk to her. I recall asking her, “Do you read English?” She replied, “Yes” (with a stunned look to her face). Then I stood and walked over to the window of the ICU door to my son’s room and tore off the Rancho level paper that was taped down to the glass. I walked back over to this sitter and said, “Then read this and tell me what it says.” She looked at the paper and didn’t answer. I then added, “Do you read that part that says, No TV?” “What part of those two words don’t you understand?” I went on and said, “You are sitting with a patient that has a traumatic brain injury and is at the 4 level of the Rancho level, this means no, and I will repeat, no TV is to be turned on in this room. Do I make myself clear?” I was tired and upset. I was amazed at the lack of communication the nurses gave to the sitters. I went back out and asked the nurse for some new tape to hang the paper back on the door. I informed the nurse of the sitter’s actions.

In fifteen days I finally get a nice nurse that gives me the telephone number to the ICU unit to call during the night if I have any questions or concerns. Fifteen days I have been at this hospital and I’m just now getting a number. I remember the very next morning there was a sticky note to the screen of the television that read, No TV Rancho level 4.

Tye’s tests came back okay on the liver levels, so this meant no surgery to the gallbladder. Hearing that, well one thing was going right after all the other problems. He now was eating Jell-O and talking more during the day to me. The hallucinations were still there, stopping the morphine (after I asked several times) and gave him vicodine for his pain. His swallowing went from mechanical food to pureed food. Tye couldn’t swallow without a great deal of coughing and as well, as liquids would come out the ventilator tube. He so struggled to eat, or swallow, or maintain any regularity to his life at this point. I talked and talked to him about anything, other than the accident. I recall him saying to me, “Is this how it’s going to be, and I really got messed up.” Those words were hard to listen to. I fought back the tears. Yes, I silently thought to myself, this may be how it is going to be, but then I would have an emotion come over me of no, this isn’t right, this isn’t how it’s to be.

My son would go every other day, eating regular food, back to soft food. Still complaining of pain in his neck, but was allowed to continue to walk the ICU hallway everyday with his walker. The nurses would message his neck and say out loud that he was so tense and that they could feel the muscles all tight in his neck area. I was worried about his neck; it just didn’t straighten back up and get in line with his body. It had been two days from the time they took the neck collar off. I was watching everything more and more closely, and I still noticed that his right foot was turned in toward the left foot when he walked. I noticed he was still not smiling, nor did I hear a laugh. He was sad and his face showed a look of sadness, or was that pain?

He hadn’t asked about anyone, he hadn’t talked about where he was or why he was hurting. The only person he wanted to talk about was his brother Trevor and that was limited conversation.

By day three October 8^th upon complaining of neck pain, I asked for a new set of x-rays. So, two CAT scans were scheduled. They revealed that his neck still had the two fractures from when he was brought into the ICU unit on Sept. 21^st. They were hairline fractures to the lower occipital lobe. Fracture to the C1 cervical and they were going to do an MRI the next morning. They started him on Loratab for pain. I sat for a straight 10 minutes watching two nurses and an aid look for a hose that would fit a size 6 trachea, before they would clear the mucus out. Everything these people did now was being watched ever more closely, by me the ‘caregiver cop’.

All night I tossed and turned in my bed, all the while of thinking about the past three days. He still was in so much pain, he still complained of his legs and of his neck. I felt like we weren’t making any progress, just going from one issue to the next. I rose up each morning to viewing thin lines of sun light through mini shades in my room and thinking, what will today bring? My thoughts were always on Tye, always thinking how can I make him more comfortable, what can I bring to him to ease his day and make things better?

The next morning I arrive to see my son was still in pain and very grouchy and upset. They had done an MRI early that morning (before I arrived). So, meanwhile, I was waiting to hear when the MRI was to be scheduled for the day. Everything was like that, waiting to hear. Everything the staff did was decided first by the staff as a team. For me, a Mother, caregiver and sole person at my son’s bedside, I was the last to know anything.

The MRI results showed C1 and C2 fracture, plus a pulled ligament that had stretched. The neurosurgeon looked at the MRI that morning to view if Tye needed surgery. A new neck collar was placed back on his neck and more Loraset for his pain. Tye was very restless and said, that he wanted to shoot himself. I was so upset at this and yet I knew just what he meant. Tye had come to the breaking point, he was tired, upset, in pain and wanted to just go home, but he knew he was in bad shape. His father came to see him for one hour today. I recall watching him leave the hospital and thinking, why do you even bother to come at all. I couldn’t understand someone driving 5 ½ hours to see their son in ICU after 20 days and only staying one hour. I guess I was alone with my thoughts, as everyone had a life to go home too. Everyone else could continue their life, but me.

At this point in time, there were only two choices to be made over the condition of his neck fractures. First choice was to fuse the bones together, but that meant that Tye wouldn’t have motion of turning his neck on his own from side to side or up and down. Fusion meant a permanent fixation to the neck area. The second choice was to attach a halo to his head. The very thought of that sent shivers up my spine. I could recall a man in the small town where we came from that had a halo on his head and he had to wear that large apparatus for over a year. The halo on the man’s head was very disturbing to look at by me. Now, I had to make the decision of surgery or a halo to help heal the broken bones to Tye’s neck. I looked right up into the eyes of his neurosurgeon that was standing at the foot of Tye’s bed and asked him, “Why didn’t you put a halo on him on Sept. 21^st when he arrived here from his accident, when you knew he had the fractures in his neck?” This neurosurgeon had the audacity to say to me; “Well I couldn’t see the fractures then.” I replied in a stern voice, “I find that hard to believe.” He tried to skirt around the issue at hand, by talking in detail about the fusion surgery vs. halo correction. I was so upset, and I was mad and most of all I was disgusted with the hospital staff anyway. I was upset in knowing that for days my boy walked the halls of ICU without a neck brace of any kind on him, he moved all over the bed in terrible pain from his legs and he had consistently complained so much about his neck hurting so why was all this happening? I thought about how he could have broken his neck and become a vegetable in a wheel chair all over this hospital not addressing his fractures at the very beginning. I thought that even worse, he could break his neck and be gone in a second and it would be their fault for not x-raying, CAT scanning or taking more MRI’s of the neck area. Maybe if they had my son would be much better or maybe they just didn’t want to do anything about it because, after all this patient had no insurance and this patient wasn’t expected to live the first 24 hours anyway. It sure seemed odd to me that after all this time, my son was still complaining of neck pain and I guess I was the only one to figure it out.

When they stopped the morphine and he had gone two more days without the heavy pain narcotic was when he first started complaining of the neck pain. The neck massaging could have really hurt him, the walking and moving could have severely hurt his healing. I walked out into the ICU area and thought and thought about everything. I met the doctor that would put the halo on my son’s head and I talked with him a great deal. I told the doctor that my son was only 28 years old and I wanted him to have a normal healing experience. The halo would be a challenge, but it would be better than surgery and limited movement. It took 20 minutes and the black metal halo was screwed into my boy’s skull. They put the same medicine that they use at the dentist office to deaden the area of the pin site holes. They couldn’t put Tye out to do this procedure, because Tye had to tell them that he could feel his hands and feet, that this was how they were making sure the pin holes with the screws were in the right place and were not hitting a nerve. I held my breath as I entered his room after the halo was put on his head. He looked fine and wasn’t complaining of any pain. I tried so hard to not show in my face that held shock nor to show that I was worried with a aching pain inside my heart. He had been through so much already, now he had to fight and deal with more.

Another day passes, but the next day would be even more stimulated. This would be the day that the staff decided my son isn’t critical anymore and needs to be out of ICU. We were going back to the 5^th floor experience, and I wouldn’t have it and again everything hinged on insurance. The fifth floor was outpatient status, the fourth floor was still inpatient and therefore he could be transferred to that floor and still have his pending insurance pay for everything. The staff took out the regular IV’s from his arm, but left the main picc line. They downsized the trachea tube from a size 6 to a size 4 now. He didn’t pass another swallow test, so back to pureed food. Tye complained and said he felt like crap. We wait all day, 6 hours before they finally decide he can be moved to the fourth floor by wheelchair.

My son was leaving ICU, but moving towards living in an isolating world with a halo on his head. My son’s story continues in my next journal writings of living in a halo world.

Part I: Rehabilitation Begins in an isolating halo world on the 4^th Floor

After 21 days in the Intensive Care Unit, we finally were advanced to the rehabilitation part of Tye’s recovery. The twenty first day was very stressful, as Tye was still in pain, but it was from the halo now. He’s was given coumadin in pill form for the blood clots, rather than shots in the stomach. His new hospital room was better looking than the ICU room, but it was small and right across the hall from the nurse’s station and ice machine. We couldn’t have any flowers or balloons in his room in ICU, but now that he was in a regular room I went right down and got the biggest balloon the gift shop had and brought it to his room. My sister had sent a beautiful large flower spray of purple iris and assorted purple flowers to his room. I hung pictures of his children on the wall (right in front of his bed) and placed the few gifts that he had received on a shelf next to the window. I looked out the window and saw the hospitality house (my room) right next to the building to the right of the emergency room entrance. I looked back to see my son laying in a new bed and said, “Tye I can see my room from this window.” He wanted to see it too, so he walked with his walker to the window to look for himself. I pointed to the right and said, “There I am right over there in that building”. What I didn’t know was that Tye couldn’t see the building that far away. He said, “Oh yeah,” and returned to his bed to lie down. It wasn’t until that evening when he walked back over to the window again and I pointed to the building again, that had the bright security light shining on the corner of the building, until I realized that it was the bright light that he could see that far away, not the building. This worried me somewhat. How badly had his injuries affected his eyesight?

The first night in a new room had its effects on a head trauma patient. He was in different surroundings, with different people and had a different bed. The new place had Tye awake all night. The evening nurse on call was odd to me and I had my doubts about her right from the beginning. At 12:02 in the morning Nurse Jan calls my room and says Tye wouldn’t settle down and could I come over and massage his legs and talk to him, and that maybe if I talked to him he would settle down. I arose from my exhausted state and walked back over to the hospital to settle my son down. I was there 15 minutes and he was fast asleep, so I returned to my room. At 2:00 a.m. Nurse Jan called the room again. Tye was awake again, not sleeping, moving all over in the bed and walking all bent over. I returned to the hospital at 2 in the morning to see for myself what the problem was with him. I notice my son walking the hallway with his walker and the sitter by his side. I noticed the bent over walking, but wasn’t associating it with anything else, other than having just had a heavy halo put on his head as well as him not being able to hold his shoulders upright.

I settled him down for the second time and returned back to my room across the parking lot and upstairs into the hospitality building. At 7:02 in the morning Nurse Jan calls and wakes me up to say, she can’t find a babysitter for Tye and her shift is almost up. I remember sitting up on the side of this hard bed and thinking, what is wrong with this nurse.

Mother Bear is Mad.

This was supposed to be the inpatient rehabilitation area of the hospital that handles head trauma patients and all the fractures of head trauma, or was I dreaming all of this. I tell Nurse Jan, that’s not my problem and you need to find my son a sitter before you leave your shift. Her voice now is stern and rattled as she goes on to say, they all are out sick or it’s their day off. I tell her again, that’s not my problem and if my son falls or has any injury to himself it will be ‘your’ name that I will be finding when I get over there in the morning. Morning, I think to myself, it’s already morning. I frantically put on my clothes thinking, no one is in the room with my son, I’ve been up all night and no one is watching my son, what if…………. I was so upset again and this time I wouldn’t stand by and just say what I thought, this time I was mad and I was going to the top people of this hospital now.

Time continues to stop the clock as I fight to heal Tye. The story continues in my next journal writings.

The Journey of Meeting People On A Path Of Recovery, written by: C. Dianne Lieber © 2007

Chapter 7.)

Memories Of Being In The Twilight Zone.

When Tye and I left the Intensive Care part of the hospital, there were people that I had met along the way in ICU. These people that had loved ones in Intensive Care that were healing at the same time as my son was. Everyday people, just like you and me, had been called on the phone and told that their loved one was hurt or ill. I recall saddened feelings when I saw the first family in ICU that was losing their loved one. Twelve or fifteen people stood outside the doorway to one of the ICU rooms, waiting while their loved one died. Oh, how I remember those feelings of sadness as I was standing in a hospital room watching my father die thirteen years ago. Another ‘twilight zone’ feeling.

You just can’t describe the emotions that your body and mind are going through when someone close to you is passing on, expiring, or near death. Here were all these people sobbing and sniffing their noses while I stood in the entrance of a doorway waiting for the final word, ‘ they are gone.’ I would have an uneasy feeling about this every time I saw grievers. Five different families experienced this loss, the whole 21 days while I was there with my son, so there were many grievers.

As I am praying and am thankful, I still have my boy each and every day, but I had to hear and see others that were not so fortunate. I even had to walk past a conversation that one of the ICU nurses was having with a couple about the ‘wishes’ of the dying person. The nurse was so matter of fact with her comments, ‘it is his wish to have life support’ and you have to honor his wishes. I passed by the couple, but our eyes met and the look on each face was of total shock and disbelief. They loved the person, that was clear, but their looks told of a two aching souls that just wanted a little while longer with their loved one. Must this nurse be so cold in her remarks? Oh, yes I told myself, it’s her job. The job was just that, a job to this nurse as I watched that nurse for several days, it was clear that her routine was to come to work, do her job and then to go home. Never did she ever put any feeling into any part of her job, because she might slip and show human emotion.

There were a couple of people I saw on a regular basis, as they were at the ICU area every day, morning, afternoon and evening. People like me that were coming to visit their own loved one in another ICU room. Our faces became familiar with each other. We would say hello to each other every day. One family stands out in my mind as their loved one had been in a motorcycle accident too. The difference was that this patient was that he was hit by a drunken driver. The man was in his late 50’s and had sustained very serious injuries to the lower half of his body. The whole area in between his legs had been, (what the wife described to me), blown out. They were going to surgically put metal plates in the groin area. Then there were two women that were sisters. One sister was the patient’s wife that came every day to see her man in ICU heal. The wife of the accident victim was quite worried and looked as tired as I’m sure as I did.  One late evening when I got off the hospital elevator, the two sisters met me again, but this time we sat down in another waiting room by a beautiful fish aquarium and had a little chat. We were comparing notes as we both had been at this hospital for so long. The wife told of the drunken driver, who was a young woman that not only had beer cans all over inside her car but that there was a 17 year old boy, who was sitting in the back seat that was just as drunk as the driver. She went on to tell me the young woman went to court and only got a slap on the wrist and that she had no car insurance. The wife of the injured man said, yes, they had insurance, but they were going to lose everything, even their home, everything as they just couldn’t pay these hospital bills. Then there was the older man that walked with me early in the morning to the entrance of the hospital doors. He told me that his wife that had been burned badly. She had been standing in the kitchen cooking, when grease had splattered on her and then she had caught on fire. She had 2 and 3^rd degree burns all over her chest, arms and neck area. I recall one elderly man told of his wife being brought to the hospital because she couldn’t breathe, and that the hospital had released her, but two weeks later they had to have her back in ICU. Then they released her again to go to the fifth floor for her rehabilitation, but they said ‘the staff didn’t know what was wrong with his wife,’ as the staff couldn’t figure out why she couldn’t breathe. The man was in such distress. He said, ‘they have to run more tests that cost more money and he couldn’t pay for it, and that his insurance wouldn’t pay for more tests.’ Each story I listened to and pondered, and then I thought that I’m not alone in my pain of having a loved one with grave injuries, however none of the stories did anything in helping in easing my thoughts. We all agreed that the hospital had some pretty strange ideas on things and agreed that the hospital was very pushy as to releasing patients out of the ICU area too fast. In the unfolding days, I was not shown any real compassion from any member of the staff at this hospital. I found this to be so strange.

Where I Come From, Workin’ Hard To Get To Heaven

Where I come from, people don’t act without showing compassion. Where I come from, a doctor still makes morning and evening rounds in the hospital and if a patient’s family is around, the doctor always stops to talk to them and answer any questions. I never had an interaction or communication with the doctors at the hospital and that was something I was having a hard time understanding, yet alone in accepting. Where I came from, which seemed by now a life time ago, people were pouring out their support for my son. Fundraisers were started to help with the mounting medical expenses. Cards were sent and telephone calls were keeping the lines hot, as everyone wanted to know how ‘Tye’ was doing.

Tye, was a small town boy that grew up around caring people, that not only people remembered this boy (now a grown man), but were reaching out to our family with great support. A long time family friend called me one afternoon and said, ‘Tye was such a special boy, he would help anyone with anything, he was the kind of person that would take off his shirt and give it to you if you needed it more than he did. He always was seen around town helping people.’ How did this accident happen and everyone wanted to know answers that question. I didn’t know, but had the same thoughts. He always road his motorcycle with care, and was never seen driving careless, so why after all these years of owning and driving a motorcycle did this accident happen, but most of all why to “Tye”?

He had his first motorcycle was when he was only 19 years old. He was so proud and showed it off to the family. Being a mother I always had fears about a motorcycle, and for years the family acquired their fun motorized toys, yet I never did see the passion in the toys as they did. I can’t even say, it’s a guy thing, because so many women own and ride motorcycles too.

Remembering words spoken from the wife whose husband was hit by the drunk driver while riding his motorcycle said, “My husband never wants to get back on a motorcycle again.’ I saw the woman for the last time when I moved my son to the 4^th floor area, the wife was wheeling a cart out the emergency room doors with her husband’s flowers and items he had in his room while staying at the hospital. I stopped and asked her, “Are you going home already?” She smiled and shook her head saying “yes, we are leaving in the morning.’ I recall asking her in a concerned voice, “Your husband must be doing a lot better?” She replied, “Well, we are going home with hospice care, he still has the ventilator in his neck and he still has all the bandages on him, and I’m so afraid of infection setting in, but he wants to go home.’ What could I say to this woman, my mind was screaming thoughts faster than I could handle. How stupid, doesn’t she know that she will be right back in ICU and does she know how many patients go home after a severe motorcycle accident with a ventilator still in them? Wow, I thought to myself, what people are told, just to be sent home. This woman was going to have real problems in taking care of her husband, but what could I say? She had a smile on her face and was wheeling a cart out the door to go home, and that was more than I was experiencing on our path of recovery.

Second Phase: 4th floor early into the behavioral anomalies, written by: C.Dianne Lieber © 2007

Chapter 8.)

You Gotta Have Faith.

Meeting of the Minds. What does it take to make people understand you? For me, it meant having a conference called “The meeting of the Minds.” Getting everyone on page one and making sure of no more foul ups, I tried having a ‘meeting of the minds’ once (while still on the ICU level) and got nowhere! Back in ICU, I was to have a 30 minute one-on-one conference with my son’s doctor every three days. Yeah right, what a laugh. Since we had advanced to the fourth floor, I thought just maybe things were looking up, particularly when a new doctor came to the waiting room and sat down and talked to me. The new doctor had a different title, he was known as a ‘Hospitalist’. Again, where I come from we don’t have different titles for physicians. Larger hospitals hire more staff, but I have to be honest, the many titles weren’t making any difference to me for improving communication.

It was the third day on the fourth floor and the Hospitalist said, “Whatever I needed, whatever “Tye” wanted” he would make it happen.” I said, “Well, I think it is way too loud where his room is located. The nurses keep him awake all night and the ice machine is constantly going.” I asked the doctor if there was a quieter room on this floor, he said “Oh yes, the room at the end of the hall, but there is a patient in there right now that just had surgery”. However, the doctor thought he’d be going right home. Am I surprised? Not the least, so I moved my son to the room three doors down the hall while waiting for the other room at the end of the hall. I liked the room at the end of the hall, as it was larger and it was the only room on the fourth floor that had carpet.

200 STEPS AWAY. One afternoon (while Tye was sleeping) I walked over to my tiny room to collect clean underwear for him. As I stepped back out of my room, I would count how many steps it was from my door to his door. With toe to heal, I began my walk from the room to the entrance of the hospital and up the elevator, down the hall to my son’s room was 200 (of my 6 ½ foot size shoe) steps. I walked into my son’s room and saw that he was just waking up. I placed the clean laundry on the shelf and sat down beside him. Then I took his hand and said, “Guess what son?” He looked at me and answered “What?” I said, “Did you know I am only 200 steps away from you?” He replied, “Oh ya, how do you know that?” I said, “Because I just walked it and counted it.” I thought maybe I’d get a smile out of him, but again no smile came to his face.

I would tell Tye, I’m only 200 steps away quite often throughout the stay on the fourth floor; it seemed to give him comfort. Saying simple little things like was all my son looked forward to hearing or even thought about.

Going The Long Haul. Being on the fourth floor seemed like we had arrived on a new floor of the hospital having to take all new tests and assigned all new doctors. A new neurologist looked at new CAT scans; an orthopedic doctor was called in to examine my son’s broken collar bone and scapular fracture. The new doctor said Tye was still at Rancho level 4 and that in 2 years, after everything we were to go through, only then would we see what level Tye would be for the rest of his life. I was to meet with the new neurosurgeon that afternoon. A second opinion in having a new neurosurgeon would make me feel better, so I thought. A rather large tall man walked into the small waiting room and sat down to talk to me about what he thought of my son’s recovery. He talked in a low stern voice, very serious and very businesslike. I listened to every word. My boy had sustained a severe head trauma and he (the doctor) went on to say that this was as good as what he thought my son’s recovery would be. He added that my son wouldn’t know numbers the way he always had in the past. Tye wouldn’t be able to return to the construction job he had, he would not be able to do ‘that’ kind of work again. He (my son) would go through anger times 3. I wasn’t sure what he meant by that at first, I sure learned fast later. The doctor went on to say that my son needed a comfort zone; he needed family (me) around on a very permanent basis. Tye must not have any stimuli, then the doctor looked right into my eyes and said that if he gets upset, or if he regresses, that he could stay there in that state forever. The doctor went over again the DAI (before and right at the time of the accident) and then into the TBI (the result of the accident). I sat numb again in a chair for about 15 minutes with this neurosurgeon who was very pleasant, but very serious and he finally ended his talk with, “You have a long haul ahead of you and I wish you all the luck in the world.” This wasn’t going to be easy, but he thought I was a strong person and I would be ok. Ok, he had no idea how I was at that very second. As he excused himself to answer his cell phone before walking down the hall, I shook his hand and thanked him. I thanked him for even taking 15 minutes out of his day to talk to me about the long ‘haul’ I was going to have with my son.

The hospitalist returned to tell me that he was putting Tye on the prescription drug Requip. The medication was to help with anger and shaking. The staff gives this drug for Parkinson’s disease. I was noticing that Tye had a tremor in his hands and the swaying back and forth from one foot to the other was another sign of the TBI and Parkinson’s disease.

In walking back into my son’s room, Tye had a question for me, “Mom where am I?” I said where he was and why he was there, just as I had done for days, but Tye couldn’t remember what I had told him from one day to the next.

By evening he once again asked me again the same question. He then asked what was wrong with him, he wanted to know what all was wrong on his body. I took out a sketch pad and drew a funny looking figure of a body. I started with the head and worked my way to the feet marking all the things that were wrong from the accident. Hearing what was wrong with him wasn’t getting through to him, but him seeing it was a whole new aspect to understanding the severity of it all. He stopped me when I got to the knee and said he didn’t want to know anymore. There would be many more days that he would ask me what that hole in his side was there for, or why are there stitches by his eye, but for now seeing a doll like figure all hurt was enough for him to grasp and handle.

Mirror, Mirror on the Wall, Who is the Fairest Man of All. One day back in the ICU unit, the staff had given Tye a mirror to see his face (right after he woke up from the coma). All Tye said was, “I’m sure messed up”. Now that he has a halo on his head, and walks around (bent over), he can walk to the mirror in his room and see for himself how messed up he thinks he is. He couldn’t get that close to the mirror and had a very hard time brushing his teeth, but then all he saw was a large black weird looking metal thing resting on his head and shoulders that he didn’t like. The pin holes from the halo that he couldn’t really see up close enough did not disturb him. He couldn’t see that the stitches around his eye he couldn’t see that well either, so he turned away within minutes and didn’t go back to the mirror.

A Mother’s Work Is Never Done. Every other day it is my job to give my son a full bed bath. Both my Grandmother and Mother used to call this a (spit bath). You take a small bowl of hot soapy water and a towel and bathe the areas that need washing and then dry the washed areas off well. My son refused to have the sitters bathe him and the nurses wouldn’t do it. They left this hygiene task up to the aids. I thought nothing of it from caring for my elderly Mother. I would go about the bathing as if I was a nurse that was just doing a job and having the patient get cleaned. I was very professional in my mannor of handling the whole thing. When it came to shaving his face, even the male physical therapists couldn’t believe how tender and careful I was with each stroke of the razor. I recall one day this same man said, “You are so good, you can see how you really care about your son”. I replied, “I’m just his Mom and I have three other son’s, so I’m well used to this kind of care, but thank you and yes I care for my son a great deal”.

Within a few more hours of this long and never ending evening, I looked at the mucus that was building up again around the trachea and noticed that the nurses on call weren’t even putting the bandage on correctly. We had asked that respiratory come and clean the trachea again, but all they replied back was, “Is it an emergency?” I stepped over to the bedside table where all the extra supplies were and took out a clean new bandage and tape for the changing of the trachea hole and I carefully took off the messy one and whipped off all the mucus away and placed a clean bandage onto the area and then taped the area. Tye looked over at me and said, “You did it better Mom, than that nurse,” and I just smiled back at him. Tye said he felt like he had a bad cold, and he had felt hot-cold, hot-cold all day. I was worried again.

Every day I would have either a new caseworker or some staff member talking to me about my son’s care. His insurance, his medicines or his therapy was all talked about on a daily routine. Therapy was limited on the fourth floor. Tye was on heavy narcotics and medicines that prevented him from having full or even part time therapy. Occupational, physical and speech therapy was to be administered to Tye every day for about an hour, but this was most difficult, considering all his injuries and medications.  He was still not swallowing well; he was not getting any form of physical activity other than to walk the hall around the nurses’ station. He would go back and forth with a walker just to keep the legs exercised and the clots from forming.

Hope and the Gold Fish.

One afternoon, I couldn’t take it any longer and I knew Tye had – had enough, so I walked with him as I pulled the stand that held his feeding tube all the way up the hall and down another one to the larger fourth floor waiting room to have my son see something new. There in the larger waiting room was a medium sized aquarium that had a few fish swimming around in the tank. There were large gold fish and couple of stripped fish. I would walk with my son over to the area where the tank was and as we walked around, anyone sitting in the waiting room would turn their head and stare at my son wearing the halo. Here came a tall young man, bent over, looking like the Hunchback of Notre Dame with a feeding bag attached to a roller stand and a walker. It was quite the sight to see, but what these people didn’t even stop to think about was, well we were in a hospital and, gee, guess he (the patient) had been in a bad accident. Everyone just likes to stare and then act like they weren’t staring. This would be my first public viewing of an injured son and me noticing people who are just are so cruel with their eyes and mouths. Tye would rest on the seat of his walker and look at the fish tank, but he only saw one big gold fish that he liked. Then we would walk over to an art piece that was hanging from the ceiling and he would glance at it just for a moment, and then say, “I’m really messed up aren’t I Mom?” With every comment, I always added the words, you are so much better than yesterday son, you are getting stronger every day. Back and forth we walked each day, up and down the hallway just to be able get to go somewhere different, and this was all my son had to look forward to each day. Back and forth from the bed to the window, it was all getting exhausting and so very sad. Each day and every evening I would sit for long hours and just talk to Tye. I would tell him about his Grandpa, talk about going fishing or tell him of a new life that I hoped that he would be having once he got out of the hospital. Each story, each thought, was to give my son some hope. That’s all we had right then, was hope. Hope that the medicine helped him. Hope that the doctor’s knew what they were doing in trying to deal with a traumatic injury patient. And most of all, hope that he could go home soon.

My heart was still aching for my boy every time I walked away to return to my room at night. I couldn’t understand all the strange things that were happening to him, but I tried my best to handle and go through each thing as it arose. The next morning, I was to meet with a neuropsychologist to talk about my son. I was already anxious, as I didn’t know if this new person would understand what had happened to my boy, or if he was he just going to council us about Tye’s childhood and all the questions a regular psychologist asks when seeing a patient for the first time? Would this man understand that my boy was different from than all the other TBI patients? Tye was my son and I wanted him to understand all the areas that were so fragile right now and to talk about for his recovery. I didn’t want some man to just ask a lot of questions, questions my son couldn’t answer and then write a thousand notes and be done with us. My evening (back at my room) was filled with all kinds of thoughts. Phone calls had to be made and paperwork filled out from the day’s experiences. Everyone called in the evening to see how (Tye) was doing. I had to replay the day’s events all over again for each and every caller so that everyone was filled in from the last call. It was exhausting; it was so painful to relieve the day’s events.

Still, we were waiting on the larger room to make Tye a little more comfortable, but it was taking a while longer. I would walk back and forth to the ice machine to get Tye ice chips. His swallowing was getting worse. I laid my head down on the pillow at night and would cry so hard as I would just be thinking of all I had gone through for the day, and then I’d cry some more thinking about what the next day would bring. My ‘hope’ was fading, but I still recall talking and trying to have faith. It was becoming so hard, so painful, and yet I had mastered getting my boy to the fourth floor without him having to be bagged and returned to the ICU area, so I guess something was working for the moment.

The day I was to visit the ‘shrink’ had arrived……continues in my next journal writings.

The middle of the road, single lane traveling, written by: C.Dianne Lieber © 2007

Chapter 9.)

The middle of the road, single lane traveling.

With any story, there is a beginning, middle and then an end. Tye’s journey in recovery and healing had now entered the middle stage. There were so many happenings that occurred on the fourth floor. In reflection, the bed transfer was just an unfolding to the many shakes of the head dilemma’s that began to unwind. Life was changing for my son and nothing would ever be exactly the same again. EVER.

Day Planner Time. Let me begin with a happening on the fourth floor. The hospital staff had set up a meeting between the on call neuropsychologist and me. Previously, I had asked for a psychologist when my son was still in ICU. After the bed transfer to the fourth floor, I began asking the hospital staff the same question. All I got was the staff saying, “They had an on call doctor, but that he was hard to get, because he was so busy”. I waited and waited as the weeks went by for the arrival of the neuropsychologist to talk to me. Finally, after transporting my son to the fourth floor, I was allowed a meeting with the doctor.

I’ve always been very skeptical of mental health practitioners. However, I figured that part of my son’s healing treatments needed some sort of therapeutic counseling. I was told that a neuropsychologist would be helpful. I really needed someone with counseling experience to talk to me about the long-term physical effects my son would have to deal with in his life. I wanted the same help for him be able to come to terms with handling information and that I share with my son at a later time. My son had come a long way in his journey of recovery. He was about to enter an area that would be quite a challenge to his mind.

The neuropsychologist walked into my son’s hospital room and asked to examine him first and then he wanted to talk with me. I had to leave the room once again, while the door was closed and the doctor examined my sedated son. Within five minutes, the doctor left my son’s hospital room and had me to join him for a conversation. We walked down the hallway to another hospital room, where we sat for almost two hours having a very serious conversation about my son’s health, past life histories, as well as his future. It will be hard for me to explain my two- hour consult with a ‘neuro shrink’.

Neuropsychologists are not medical doctors in the way one would call someone holding the title of a doctor. Neuropsychologists are persons trained in the fields of psychology and psychotherapies with an emphasis on the brain functions. They are not psychiatrists either. Based on a World Wide Web internet definition, a neuropsychologist begins treatment with testing. “Neuropsychological testing is designed to determine the brain’s capacity with respect to short and long term memory, abstract reasoning, attention, concentration, executive functioning, motor skills and other cognitive and psychological factors. By comparing the pattern of these results, against the patient’s pre-morbid capabilities, and correlating these results with the nature of the trauma suffered by the patient, neuropsychologists can, to a reasonable degree of certainty, opine that individuals without an acute diagnosis of brain injury have permanent deficits as a result of brain trauma.” That’s the definition of a neuropsychologist as what I had researched. I learned not to call every psychologist ‘a shrink’; I learned neuropsychology is a specialized field of study in the mental health and medical professions. I was given a detailed diagram of my son’s brain trauma.

During Tye’s recovery, there were many doctors that asked the same life assessment review questions. Such as, what was Tye like as a young baby? Did you have a difficult birth? More questions were asked of me about Tye’s teen years and his young adult life experiences. I shared with all doctors that my son was well seasoned from the time he was about 10, and I had a pretty colorful discussion with this doctor. The whole time I sat and talked about seasons in my son’s life that were most disturbing to me, the doctor was very patient in his listening. He leaned way over and said he was most worried about me. Was I talking care of myself? Was I eating? Questions of concern about the welfare of me, was a change in pace. I appreciated the fact that this doctor didn’t write down every word I said (into a noted form), but I was able to attract his attention with a few of my long-term fears. My sister shared with me that the neuropsychologist was concerned about the vicarious stress factors from me dealing with a person that has suffered a traumatic accident and the effects of brain injury. Yes, vicarious indeed, I was in shock and trying to function in a healthy manner without showing signs of distress, or mere exhaustion.

Fears, Uncertainties and Doubts. I told the neuropsychologist that my son wasn’t a middle aged man, yet he would want everyone to be very straight forward with him. He would take the news of his friend’s death one or two ways, and there would be no middle ground. Tye would either accept the death of his friend with normal human emotions reflecting sorrow and remorse and deal with it in a mature manner or he would go the other way and not know ways to cope with the many losses. I know my son pretty well. He has a strong spirit, but the accident and fatality was the worst thing that had ever happened in his life. It wasn’t just an accident on a motorcycle where he had crashed and the bike was totaled by the insurance adjustor. The accident involved another person’s loss of life. His friend’s life ended on planet Earth the night of the accident. A great void was experienced for all concerned. In my opinion, the degrees of grief would affect my son psychologically. My concerns were how he would be told of his friend’s death and why he didn’t lose his life in the accident? How my son would handle knowing his friend died. What would he say or do first. Would I, (being the one with him so much) be the one to have to tell him and what would I say first? I thought maybe me hearing a psychologist’s point of view would help me with saying the appropriate statements to Tye when that day arrived.

The neuropsychologist took extra time and drew on a white bulletin board Tye’s brain injury. Then he went into more detailed information about what the brain does after a traumatic injury. The visual drawings helped me understand that my son had already survived the worst part of the brain injury traumas.

My son was alive, he was walking, and he was talking. The sedation was the staff’s idea of placing him under a more restrictive environment due to the fourth floor area. When Tye came down off the heavy pain meds and other drugs, he would be awake to ask questions and I knew that day was near. The Neuropsychologist said, “He (in his opinion) didn’t think that Tye would even remember his friend, based on the severe injury to his brain mostly because their shared friendship was so short lived in his life.

The doctor went on to say that my son wouldn’t remember the accident as well. In addition, the doctor said that “Tye probably wouldn’t recall the week leading up to the accident with any real degree of accuracy.” The doctor agreed that the personality that Tye had would make hearing the information a challenge only in the respect that he get a good grip on the facts and deal with them. Then he added that Tye would need me, (the caregiver), for five years. He would need help in his life with areas that now were going to be difficult.

Every area to my son’s life had suddenly changed. Tye would not be going back to his (normal) way of living. My son would not be the same Tye that I remembered. I was told he would have changes to his personality that most of us, (the family), would not understand or even care for, except that we were to be thankful that we even had him alive. By all accounts, my son never should have made it through even 10 minutes of life after hitting his head as hard as he did. The brain had taken quite a blow and it was all shook up inside, and it would be a miracle to see how Tye would gather up his memory and function, with whatever was left from this trauma, to his brain. Everyone in contact with Tye was astonished at how he was even walking around. Anyone seeing him after seeing the CAT scans, MRI’s or X-rays said they couldn’t believe he was alive. He was my walking, talking miracle and no one knew it better than I, but then no one knew the spirit inside my son either. Something was energizing him within, something was keeping him going and I still to this day believe in my heart that if I hadn’t been there every second with him, he wouldn’t have moved forward in his journey of recovery. He moved at a snail’s pace. Everyone kept saying to me, “You have such a long road ahead of you.” Everyone said the journey has just begun. I heard all these words, but it didn’t really sink in at the time, because I kept thinking Tye and I had overcome or jumped another hurdle and he was improving.

The neuropsychologist added his thoughts about Tye’s future plan, but also he said that it would take his family and me to get Tye through this difficult period. In two years, we (the family) could see at what leveling out point Tye would be and that was to be what we would see Tye at for a long time. Staff, doctors all said the same thing, if Tye was too stimulated, he would regress. If things weren’t handled well, Tye could stay in the area of regression and not move forward in a more progressive manner. People forget after an accident of what the future still holds. We all think that just because the patient is improving, that everything is up hill from then on, but what happens when it still doesn’t go up hill? Then comes the area when the patient is frustrated and the caregiver is worried that the regression has begun. My deepest concern was when Tye would be going home, what was down the road for him? He wasn’t even out of the hospital yet, he hadn’t advanced enough to even be in rehabilitation, so my future thinking would have to be on hold until that day arrived. For now, I was dealing with the every hour developments and the rotating staff.

In wrapping up the conversation with the neuropsychologist, he then said that he would see my son again and evaluate him further. Much to my disappointment, that never happened during my son’s hospital duration in eastern Colorado. Walking back into my son’s room, I watched a young man still struggling with his physical pain and my heart sank once again. Tye wanted to know where I had been for so long. I reassured him I was only two doors down from his room, talking to another doctor. I began to play a little game with Tye every time I left the room for a moment or two. I would set my purse on the table next to him and point to my purse and ask him what does that mean? At first Tye didn’t understand, and then I said, “My purse is going to stay right there until I return Tye, and remember, a Mom never goes to far away without her purse, right?” I would get a reassured look from my son and then he would say, “yeah that is right.” I would walk out into the hallway and as I walked a couple of steps I could hear my son tell the sitter, that’s right Mom’s never go anywhere without their purse, so she will be right back. The young sitter would agree and say, “your Mom sure has good ideas and she is right, she will be right back.” I would think up new ideas every week of things to calm my son down in his struggle of feeling left in a hospital room alone. He was not alone, but to a brain trauma injured patient this was an increased fear that wasn’t going to go away. The fear of closed in areas was developing in Tye, which was something he never had before the accident. Life was changing for my son, even in the hospital. Nothing would ever be exactly the exact same again. My son was living in a claustrophobic world with a halo on his head, not being able to return to his everyday living tasks and he had feelings of entrapment, while dealing with body pains and the long journey of recovery of healing mentally, spiritually and physically.

The story will continue in my next journal writings. The anger sets in with the rant and raging while traveling in the middle of the road towards recovery and healing.

In the Dark of the Night Lying Under A Harvest Moon, written by: C.Dianne Lieber © 2007

Chapter 10.)

In the Dark of the Night Lying Under A Harvest Moon

Five days of watching and observing interesting behaviors and more health struggles continued for Tye. The hospital staff had to put a catheter in Tye again. My son was still very restless and couldn’t sleep, so the staff put him on Ambien. More tests continued. He didn’t pass another swallow test and he was still having hallucinations. Tye is sleeping more and more, but awakens often in a completely different state of mind. The hospital staff had to put back in the feed tube as Tye wasn’t getting enough percentage of food. Out of 100 % results, he was only at 54 %. Tye was sad about having the feed tube put back in him. The ear, nose and throat Doctor told me Tye had a damaged vocal cord. Big surprise there, no one at the hospital told me about this injury either. It just seemed for every step up, we still went two or three steps back down in progress.

Finally, we move down the hall into the bigger room and I felt that the move was a great step for Tye to be in a positive atmosphere. I continue the personal hygiene tasks of giving him bed baths and caring for his feet. There was something going on with his feet that weren’t normal to me. He was badly scaling. The skin on his feet was thick. The scales made his feet look like a creature from the black lagoon. I had to scrub and peel dead layers of skin and then rub heavy creams all over his feet as well as the inside of his palms on his hands.

In reflection, I saw a young man lying in a bed so not himself. My worries for my son continued for weeks. The young man that I remembered was in the bed, but he was no longer a child, yet, he talked as if he was about an 11 years old boy. He looked at me with young boy eyes. He looked scared, fearful, showing uncertainty in his eyes. His world was now as dark as the night sky under a ¾ harvest moon.

Lying Under the Harvest Moon.

In an uncomfortable recliner chair in his hospital room I would sit for hours and observe Tye. In observing his actions and behaviors, I often wondered what he was thinking. My thoughts wandered from the beginning of the accident, and then as to how everyone interacting with Tye must feel. I would wonder what it must have been like to lay for 6 ½ hours out in a cold dark corn field with the night’s sky looking down on a much wounded body. What was going on in the heavens above on that night? I just kept wondering. He shouldn’t even have been alive after sustaining all the injuries, so I was told by every doctor that talked to me. My thoughts wandered into the first light at dawn, and I wondered what Tye saw, what he had thought or heard as he opened his one good eye. My heart hurt badly every time I even thought back to that night. I had to control my own anger and rage. I’d wiggle and squirm in the hard recliner and shift my thoughts to everything that had gone on in the hospital and how angry I was over the problems. Then, within moments as I’d watch my boy move his leg or arm in his sleep, I’d think to myself, it all doesn’t matter, he’s alive and he is moving, so for that I am so thankful. At peace, I know that God knows my heart aches for my son.

Surely in a few days, we can get out of the hospital and start to begin to heal in other areas of our life. There is so much healing that still needs work. Every time Tye would open his eyes, I made sure that I was by his side. The times that I wasn’t by his side, is when something always was going on. It made me feel very uneasy to go back to my dungeon room at the hospitality house, because I just felt that the hospital staff just couldn’t get things right, particularly when it came to caring for my brain-injured son. Not that I was the professional in all areas by any means, but a good, functioning Mother knows when her child is hurting, is in pain, and things are just not right. I knew that if I left the room for even 15 minutes, Tye could fall, hurt himself, become angry or have some other experience. Maybe if I were there, I could help calm down and I found this to be more than true on so many occasions.

Weeks had gone by and I was feeling as though I would never get back to my home, my life prior to the accident, my tiny little world as knew it to be. Trying to stay focused for moving towards health goals for Tye, I had to begin working on relocation facilities for ongoing in-patient as well as out-patient care. The rehabilitation facility [I had picked closer to home] was not going to work out due to the fact that Tye wasn’t improving enough for entry into their establishment under all their guidelines. Oh I, had put so much thought into ‘when the day arrives’ to have him moved to a different hospital for his rehab so that he would be more comfortable. I’d recall conversations from distant friends and Tye’s family that were most disturbing to me.

Tye’s family unit wasn’t in agreement with any hospital care choices. Many people wanted to make decisions for Tye, but they weren’t caring for Tye 24-7 like I me. The family didn’t grasp that the hospital of their choice wasn’t going to accept an insurance patient status as pending. Tye’s pending insurance status wasn’t even at the 30-day mark, yet all the many family members [distant at best], weren’t helping or becoming involved daily with Tye’s recovery. Demands were made of me to choose “their hospital of choice” for Tye’s continued health care. My mental state was at a point of overload, from filling out massive paperwork, as well as making many sudden decisions, and yet still caring and holding my own anxieties [worries] about the daily care of my son.

The Anger Unfolds in Treatment Goals. During the next week Tye’s oxygen level dropped to 76. The hospital staff put him on Level 6 for oxygen intake and then we waited until his oxygen rose to the 91-95 area. Another chest x-ray was ordered. They were giving my son Haladol for his anxiety, but he seemed to flip out on this drug and his anger was very bad. He would wake up from a sound sleep and his eyes always told me something was not right. Tye didn’t look right in his eyes. He had wild looking eyes, eyes of rage. This is where the anger begins that the staff warns you about, but they don’t go into detail about, or get the (caregiver) ready for, truly understanding what was about to unfold.

The anger episodes were all part of head trauma, but why with such rage? I recall a visit from his third brother that had Tye so upset. All over Tye’s truck and some paper that was needed to be signed for making payments to the bank. Most paperwork had to be done behind Tye’s back while he was in recovery for healing. Tye was very observant about things going on around him. He seemed to have an uncanny way of knowing if people were doing something behind his back. He could hear a person whisper in the room and wanted to know everything that was going on around him, but at the same time, he was so confused and then he would become upset.

During the week, I decided that the daily walking of the halls was too much for Tye, particularly when he was heavily sedated on medications. So I asked for a wheelchair to take my son on a ride around the halls. This was a new approach to getting away from the four walls of the hospital room. Tye enjoyed his rides, but they were short rides, he just couldn’t stand sitting in one place for more than about 15 minutes.

Due to another staff shift change, Tye’s regular physician had been changed again. The doctor that was regularly available was gone, thus, I was to experience a new doctor on call this week, which absolutely upset the whole apple cart regarding my son’s health care needs.

I had watched my son going in and out of these anger episodes all week. I was so worried about him. I was drained emotionally just watching Tye become so very angry about anything and everything. It could be about a glass sitting in a different place and he would go off into a rage and start yelling and saying all kinds of terrible things. The previous doctor that was available, usually had put Tye on Ativan for his anxiety and the drug seemed to help Tye. The doctor told me that Tye could have the Ativan whenever the anger elevated. However, the new doctor on-call decided that Tye didn’t need the Ativan as he wanted to take the ‘redirect method’. For every time my son went into the anger zone stage, the staff (the sitter and nurse) had been directed to redirect the patient. Redirection was explained to me as “the patient was to be talked down, or distract the patient with words or take them away from whatever they were angry about.” I don’t think I’ll ever forget the afternoon when Tye went beyond the redirect treatments.

The Patient Wants To Be A Mechanic For The Day. Tye woke from another nap and sat right up on the side of his bed and started to yell about the bathroom door not being open for him to walk in. His eyes looked of rage, and the 21 year old sitter was so frightened in her face, that I knew that this was a bad anger day. The nurse on call was a young woman in her early twenties and she appeared to have no idea of how to handle a brain-injured patient going into rages.

I went out into the hallway and walked as fast as I could to the nurses’ station to address the head nurse and ask her to ‘please give my son more Ativan’ because he was is really much worse in his anger that afternoon than from the days before. The nurse had to look first in the notes from the regular doctor and then she would have to ask the ‘on-call’ doctor if it was okay. In the meantime, I walked back into the room and now Tye wanted to go for another wheelchair ride. The wheelchair that the sitter had brought to the door entrance that afternoon was a different chair than we normally had been using. I recall waiting while the young sitter as she unplugged the oxygen line from the wall and took hold of the stand that held the feed tube bag, while Tye was watching me hold the arm of the wheelchair and the arm pad was wiggling. This made for an interesting dilemma for Tye in that he thought the chair was broken and he was going to fix it. He pulled and pounded down on the wheelchair arm with such force, I became alarmed and asked him to please leave it alone and it would be ok. He became very angry. It was apparent that anything the sitter or I could say was not going to make my son stop what he was doing. He raised his legs up and pounded the chair with his foot and I became uneasy and alarmed at the fact that he could hurt himself. He was so mad at the sitter for bringing in a broken chair that he screamed at her.

In a very soft voice I spoke to Tye and told him that if he sat down in the chair I would wheel him down the hall and we would get a new wheelchair. He accepted my comments as his solution to the problem for that moment.

Passing the nurses’ station, I asked the nurse if she had talked to the doctor yet? All she said was, “He is on his way up to talk to me.” Good, I thought at the time. In discussion after discussion about allowing my son to have an anxiety pill to quiet his anger moods down, all I got in return was ‘We, the staff, feel that if we redirect’ that we can get more done than adding more drugs. I returned the broken wheelchair and got a different one, and then we returned to Tye’s room where I felt he had quieted down enough that he might lay back down in bed and rest while I got myself a cup of tea.

After the wheelchair stroll, Tye did return to his bed. I was going for my cup of tea and told Tye that I’d be right back; he seemed fine with me leaving him. I wheeled the chair back to the hallway; and again, in a brief conversation with the head nurse, I expressed my concern for my son hurting him or the staff if he wasn’t given the tiny Ativan pill. From the intense anger that he had displayed in his room I wasn’t sure if he was going to pick up the wheelchair and throw it at the window or what he was going to do next, so it was very unnerving. I expressed to the staff, how I felt about the lack of care regarding ‘being on their toes’ for helping a brain injury patient go through a rage episode.

I walked down the hall to the elevator, took the elevator to the next floor down, and walked to the hot drink machine. Everything at the hospital was so disorganized, or under staffed, even down to getting a cup of tea. On floor 3, a person could find hot cups, but no sugar. On the ground floor, a person could find hot water and maybe a basket of sugar. Can you imagine a person riding up and down an elevator doing such a task? I returned to the fourth floor with a hot cup of tea in my hand and walked back into my son’s room. On my walk back I was thinking about curling up in the hard recliner to sip my tea while watching Tye rest. No such luck, because I walked into the room and the head nurse’s face was white as a sheet and looked as if she had just been floored by something. I asked her, “What was wrong?” She replied, “Well Tye pulled out his lead line in his arm.” I said, “In anger?” Her reply, “Yes, I’m afraid so,” she replies. I said, “What is it going to take to make you people understand that I am not going to have my son hurt himself or hit the staff? Where is the doctor?”Agitated, I was speaking in a raised tone. By this time, I had – had it and this was the second stupid thing the hospital had done, and I wanted answers.

The new assigned on-call doctor finally made it to the fourth floor and tried to talk to me about not giving my son more drugs such as Ativan. He felt that Tye didn’t need it. The doctors statue was a short man wearing a white doctor’s jacket. He stood in the hallway outside my son’s room and began to tell me that the neuropsychologist report clearly states that any future anxiety medication wouldn’t help with the anger episodes. I said to the doctor: “Show me this report, because I feel this is wrong. Clearly you can see that my son needs to have something to help these strong anger periods.” He demanded that I sign a release form to even look at the neuropsychologists report and then I read the one page medical treatment plan. I looked at the on-call doctor and stated to him that for two weeks the regular doctor firmly told me that my son could have as much Avitan as he needed. The on-call doctor repeats the ‘redirect’ method. I reply, “Your redirect method isn’t working!” Then the man actually asks me: “With your permission, I won’t give the Avitan to your son.” I replied to him:” You do not have my permission and you had better get the regular doctor back on the phone, and by the way I want to talk to the head of this hospital NOW.” I left the on-call doctor to return to check on my son. I saw that he was resting, so I walked back out of his room to an empty hallway to see an empty nurse’s station. I had made many phone calls I had made to people over this whole hospital experience, but my heart was telling me that I think now I’ll be looking for some legal counseling. Upon walking back into my son’s room, the head nurse is inserting a syringe into Tye’s lead line and I ask her what she is giving my son now? Ativan, she replies, the doctor just approved it. I exhaled a breath and said, Really!”

One hour later I was sitting in a small cracker box room and gave my story to four hospital staff personal. The original doctor said, “That never should have happened” and I agreed. The head nurse said to me, that Tye was very angry and now I had some abrasive woman (who said she was the weekend floor administrator) tell me that it was the doctor on-call whom did not want to administer the Ativan. It is their “call” for any on call weekend doctor to make decisions about a patient and sometimes those decisions don’t match the other doctor’s treatment of the patient. I was outraged, but this clearly wasn’t the first time this hospital was covering up for their staff. For a second time, I write down in detail all the negligence concerns from the so called wonderful hospital staff which clearly makes one believe that staff is there to ‘help’ you and your loved one.

The night quiets down and I sit alone in a frozen state in a black tunnel of confusion with turmoil. Patiently I sit and looked on as another nurse comes in to repair the lead line in my sons arm. Tye had pulled so hard on the line that it had dislodged. The staff would have to run a whole new line into his arm and down into his chest. This was another bedside operation. I prayed every night, but somehow I felt my prayers were resting on deaf ears.

The time spent caring for my son was like being in a horror movie. I was there all by myself trying as hard as I could to deal with monsters lurking and jumping out of every corner. Family was hard enough to watch with their freak show antics, but the constant actions from the hospital kept me on a roller coaster ride from staff behaviors, which was taking a toll on me. I felt like I couldn’t take any more, my worries were so great and everyone just seemed to go home and call now and then. No one was there at the hospital visiting any more, no one was helping me in any way, and everyone just took a back seat, but wanted to be the front seat driver. What more could possibly go wrong?

Into the revolving door: