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 8th 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. 21st. 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. 21st 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 5th 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 4th 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.
