A TBI Diary
Coming Out of a Coma
A Daily Diary
Note: Names have been omitted at the request of the author.
May 21, 1985
Today is your 17th birthday and your father and I feared for you because we felt you wouldn't resist the drinking temptation. God, why didn't you protect our son? Why must we suffer a greater hardship? When the police and then the E.R. called our stomachs churned. We rushed to the E.R. and saw you lying there, unconscious, knowing that death could come at anytime. Your girlfriend, said you had kicked out the back window and jumped out of her car. We waited four hours, your girlfriend was with us and my heart was breaking after so many other cracks before this night.
May 22, 1985
We didn't get home until 5 A.M. so we caught up on a few hours sleep and went back to the hospital. Your aunt came and your Grandma and I had your aunt call a few friends and relatives. Your girlfriend had just as little sleep as we did but she went to school, then work, then came to be with you. Every minute seemed like an hour.
May 23, 1985
The phone rang at 2 A.M., it was the doctor. He said your condition had deteriorated. The cranial pressure was increasing, blood pressure was up and they said that they would take you for another CAT scan. The doctor called again at 4 A.M. and said it still was bad. He was going to call in the surgeon. He called again at 4:45 A.M. to get permission to drill into the skull & insert a pressure monitor and to drain some cranial fluids. We gave the O.K. but couldn't sleep anymore under this stressful condition. We left for the hospital at 10:15 and the surgeon, said the pressure was 47 to 49, a sure death without surgery since a clot showed up on the scan. He showed me the picture of the brain and pointed out the clot and the area where the tissue was totally dead. He said he needed to remove this dead area to relieve the pressure (1/5 of the brain). I could also see speckles of white dead tissue all over the brain. I had already cried for over an hour at home and after this news I couldn't stop the tears. Surgery lasted 3 hours and I cried on and off the whole time.
During the long wait, one of your friends from school hobbled by on crutches, he was in the hospital for knee surgery. He and his mother talked with us and were quite concerned. By this time most of the kids in school knew about the accident. One of your friend's grandmother came by the hospital and talked to us before the surgery. She said it had scared her grandson, and another friend had taken the news quite hard. You remember these two boys from Coastview, your drug rehab hospital.
Finally the doctor came to us with the news you had fared well and were in recovery. We asked him a bunch of questions like will he walk, talk, come out of the coma? The doctor was very vague and he said he really didn't know. According to the damage in the pictures you probably wouldn't talk and you may not walk again, but every case is different and with head injuries not enough is known to be able to give a definite answer.
We left and when we arrived home the phone wouldn't stop ringing. I called a friend to get some comfort since she had been through the same thing just 2 years ago with her son. Her son took the news pretty hard. Dad called a long time friend of yours and she broke down over the phone. Someone from my FA group called and she just couldn't believe this had happened. Other friends from my FA group sent me their support. Pat called and said he and the staff at Coastview send their love and support. He said anytime we needed help he was there and he loved us both. (He had told me when you were released from Coastview that I should be prepared to lose you since your addiction would eventually lead to death). Your aunt and uncle came down that night to go to the hospital with us after surgery. Your girlfriend had stayed by your bed and cried a lot.
May 24 to 30 1985
During this period of time you had major surgery again for an abscess on the lung which ruptured your lung and caused you to again come to within inches of losing your life. The surgery was successful and they used drugs to keep you in a coma to let your body start the healing process.
May 31 1985
Today they weaned you off the drug that was inducing the coma.
June 1, 1985
Today your eyes were open and you responded to simple commands of "squeeze hand" and "raise arm". You had developed a staph infection and your fever had escalated.
June 2 to 3, 1985
They put leg and feet casts on today to protect you from atrophy and you were sleeping, no responses.
June 4, 1985
Woke up and had lots more movement of extremities but not responding to commands.
June 5, 1985
Had a lumbar puncture to see why fever was persisting and doctors found meningitis so they called in a new doctor specializing in infectious diseases.
June 6, 1985
Fever was up to 104 during the night but down to 99 this morning. Eyes are more alert and you grabbed dad's shirt. As we were leaving you broke out in tears.
June 7, 1985
The doctor called and said you were having seizures which he said he would control by putting you on Tegretol. That evening you were more alert and you put your leg over the side trying to get out of bed. You patted dad on the back.
June 8, 1985
You still had a lot of movement but weren't responding to any commands.
June 9, 1985
Doctor said the meningitis was clear but you still had a fever and they were puzzled as to why. As the nurse was fixing your IV you grabbed her pigtail, but you were still unresponsive to commands.
June 10, 1985
A.M.-You were alert and watchful but still unresponsive to commands. Your girlfriend was here and as she left she waved bye-bye and you waved back.
P.M.-You were much more agitated trying to grab the catheter tube and pull it out. You had earlier reached up and pinched your girlfriend's lips shut as she was reading a book to you. The nurse came and suctioned your lungs and you looked at her with such hate and anger in your eyes.
June 11, 1985
A.M.- Much more unresponsive this morning and you only seemed to want to sleep so we left.
P.M.-This time you were more alert. I had brought a large writing pad and wrote your name and handed it to you and you wrote your last name without any prompting and we were thrilled. You tried to write more but we couldn't read it. I had you count with your fingers and you did pretty good but you became very tired and fell asleep so we left.
June 12, 1985
They took you off the vent today and removed your old leg casts and put a new one just on your left leg. Your fever was still persisting. Your eyes were glued to the T.V. set and we had a hard time getting your attention. Dad wrote your name on the pad leaving off the last letter and you wrote your name adding the missing letter. Your writing was real shaky but plain to see what you wrote.
June 13, 1985
You were doing fine off the vent and they were suctioning once every hour. Dad wrote a command to lift your left leg back onto the bed since it was hanging over the side. You paused to read it and then you did what he had written. He wrote a few more commands and you performed each task.
You had learned a new trick since the nurses had tied down your hands to keep you from pulling the catheter tube out. You positioned your left foot so you could put the tube between your toes and you pulled it straight out. The nurses then had to tape the tube to your leg.
Today we visited the rehab section of the hospital since they were getting ready to move you down there. It had a therapy room with lots of equipment and a pool and a training room to learn everyday chores and of course the section for bed care.
June 14, 1985
Your dad and I had a meeting with your doctors today to answer our questions and plan your therapy. One doctor was amazed at the progress but told us to slow down and not to push too hard. He explained that when you pushed us away you were agitated and that we should stop and let you rest. You couldn't smile yet because your mouth muscles weren't coordinated. The doctors still were not answering a lot of our questions but they said enough to relieve some of our anxieties.
June 15, 1985
You had a lot of visitors during the day but you showed a lot of agitation and slept most of the time.
June 16, 1985
The therapist had you sitting in a wheel chair for the first time. You grabbed dad's arm and scratched it pointing to your cast. Dad scratched around your cast and you seemed to really enjoy this.
June 17, 1985
Your nurse said you had a lot of therapy today. They even tried speech therapy but you couldn't talk yet. The nurse said your fever was almost gone and you were coughing up the lung secretions better and that most of your new tests were showing negative.
Dad had brought in a paper cup with some ice and put some in your hand. You threw it at him in a playful manner. Dad then handed you the empty cup and you played like it was full and tossed the contents at your dad. Dad played along with you and pretended you hit him in the face with a full cup of water and you smiled at him. Your girlfriend had just come in and she saw you smile and broke out in tears of joy since this was your very first smile. We were all so elated.
June 19, 1985
Tonight you weren't very responsive. Dad exercised your legs and we left early because you seemed real tired.
June 20, 1985
The nurses had you tied down real good since you were trying real hard to get out of bed. We brought in some pictures and you smiled a lot. When we were leaving you seemed to start to cry and mouthed a word that looked like "no". We hated to leave but you needed your rest.
June 22, 1985
You were very attentive tonight and looked at more pictures and played with a balloon, hitting it around. I handed you the tablet and you wrote "I love you mom", "I love you dad" very plain. You also wrote "I love you mom" on your cast and signed your name. You were also nodding "yes" to some specific questions and when I asked you to let the nurse brush your teeth you shook your head "no". You wrote a message to have dad help you to exercise your legs which he did and you smiled. Your cousin came to visit and brought you a plant. You were getting quite tired so we left.
June 23, 1985
A.M.-you were bright and chipper this morning and you wanted dad to exercise your legs. You were writing on the pad but not as well as before and some of the words were backwards. You wanted to listen to some music tapes. As you listened you were mouthing the words but you were getting tired so we left.
P.M.-when we came this evening they had moved you down to rehab. Your girlfriend had brought her radio and you were fooling around with the dials and turned the volume way up. I turned to straighten out your cloths and my back was to you and you wanted my attention so you called out "Mom". I was so thrilled because this was the first time you had spoken. You didn't say anything more the rest of the visit. You still seemed a little confused this evening so we left.
June 24, 1985
Dad wasn't feeling well so he stayed home tonight. Your girlfriend was already there and you were eating real food for the first time even though it was mainly liquids and pureed solids. You only took a few bites but drank all your milk and juice. Your girlfriend said you had stood up on your own earlier that day and were in a real loving mood and wanted lots of kisses. We both left together to let you rest.
June 25, 1985
You took a few steps earlier today but were not eating or drinking. You wrote a few things but were not making any sense and you hadn't said anything at all. You were very tired so we left early.
June 26, 1985
When we got there tonight you were surrounded by girls. Your girlfriend and a couple of your old girlfriends had come to visit. You were in a very cheerful mood. Your girlfriend had gone to therapy with you earlier and watched you use the bars to walk and you were doing very well. As she was wheeling you back to your room you pointed to a coke machine so she bought you a coke. You also snatched a paper out of the nurses hand as you wheeled past.
Back in your room you were playing with the buttons on your bed and wouldn't leave them alone. Dad had to divert you attention to something else because you were so persistent. You still weren't eating very much and you had lost a lot of weight by this time. We had brought in your Pacman game and you got interested in that and did very well. You were getting very tired so we all left.
June 27, 1985
Tonight you had a new roommate and he had a lot of visitors. You were very agitated and were not very responsive. You were displaying a lack of inhibition and were insistent on exposing yourself and got very angry with me when I tried to keep you covered. After all the visitors left you seemed to calm down somewhat and dad got you to drink all your protein drink. Your attention span was very short so we decided to leave to let you get some sleep.
June 28, 1985
You were sleeping when we arrived and we couldn't rouse you so we let you sleep. The nurse came in and woke you. You were still in a bad mood and you were talking in short sentences with the words all confused. We couldn't understand most of what you were trying to tell us so we thought it best to leave and let you sleep.
June 29, 1985
A.M.-You were in much better humor and the nurse helped you into your wheel chair so you could get to the sink to shave. I handed you the washcloth and you got agitated and threw it in the trash. I then handed you the razor and you threw that in the trash and said a very emphatic "NO". Your therapist came by then and she said not to force the issue.
June 30, 1985
This Sunday morning you were much improved and we decided to wheel you outside. You were elated because you thought we were taking you home. Of course you still needed much more therapy and your food intake was not up to par but you were hard to convince and it took lots of talking by your dad and me before you gave in. As we passed the coke machine you said you wanted an orange soda and you put the coins in yourself and opened the can yourself.
We took you back to your room so you could go to the bathroom. You were talking much better now and the nurse wheeled you into the bathroom and you went all by yourself without the aid of the nurse. You wanted the T.V. turned on and also the radio and also wanted to play Pacman all at the same time. You wrote a note to your dad to bring in your jeans and Levi jacket on our next visit.
Later that evening we brought in the requested cloths and you were all smiles. Dad helped you to put them on and once you were dressed you were insistent again on us taking you home. Again we had to explain that only your doctor could release you and you became very angry, cussing up a storm (again displaying a lack of inhibition). Dad had to be firm with you. You said we lied to you and we said we would take you for a ride in your wheelchair but not in the car. A friend came to visit you then and had brought a nerf ball and you cheered up and were tossing the ball around. It was past visiting hours so we had to leave.
As we were leaving dad tossed you the nerf ball from the doorway and you caught it, quite a feat. I couldn't get over the how well you were communicating with us now. Your daily improvements were now at a very rapid pace.
July 1, 1985
You wanted to go for a ride in your wheel chair and you wanted your jeans on. You wanted us to wheel you outside but we had been told to keep you inside and you then wanted to go back to your room. You started to pack your cloths to go home and again we had to convince you that you had to stay at the hospital. We explained we wanted you home very much and it was very difficult to refuse to comply but we knew you weren't ready yet. You became very emotional and hugged dad and cried and dad reassured you that when you were ready and the doctors said it was OK we were going to take you home and that he loved you very much.
You expressed a lot of doubt about never being able to live a normal life and you were afraid of drinking again. Dad said we would make sure you had a very useful life and you wouldn't go back to drinking again. You have lots of relatives and friends who would help you. Dad said keep thinking about things because it would help to bring your confused thinking into focus. We had to leave because you were getting very tired. We promised we would come back the next night.
July 3, 1985
Tonight and the previous night you were much calmer and not so fired up about coming home. Dad brought the hair clippers but you weren't quite ready to get your hair clipped. You were in a game playing mood tonight so we played cards and you didn't talk much. I patted you softly on the back of the hand and you pulled away and said that hurt. You were eating more solids now and I helped you eat and you were swallowing much better. You seemed much tired tonight and said "go" so we left to let you rest.
July 4, 1985
You were in a much better mood this morning and dad brought the hair clippers again and you said "no". You wouldn't shave or get a haircut until you got home. You wanted to walk around a bit so we walked you to the lounge area so you could look outside. We still couldn't take you outside because of your persistence in going home. We had lunch with you in the rec room and you did real good and then we played cards for awhile. Some of your friends from Coastview came by so we left.
July 5, 1985
You were in a very grouchy mood and were talking about coming home again. You walked out to the nurse and said you were checking out and she said only the doctor could check you out. You said fine then you would just walk out. This was a real worry to me because you were still very shaky and on seizure medication and your words were not clear and you still got real confused. The nurse had me sign a form to get your picture taken so that if you did walk out the staff would have a way of identifying you. Your therapist came then to take you for a session and we went along. We watched for awhile but you were getting very agitated and angry so we left.
July 6, 1985
Everyday was now like a broken record with "I want to go home now" and it was a real worry to both me and your dad. I called the therapist to see if I couldn't get some help in calming you down and she said she would get me some help. Well I still haven't heard from the doctor and the problem was escalating.
July 7, 1985
We brought your aunt and uncle with us for your visit today and you were in much better spirits. We were even allowed to go outside in the patio area and you wanted to play cards so we did. Then you were tired and wanted to nap so we left.
Later Dad and I came with the clippers in hand and you consented to let dad give you a haircut but you would shave yourself. You had a very hard time and didn't use water and gave up after a few swipes and then couldn't get the shaving cream off since you used a dry cloth. I asked if I could help and you let me wipe off the soap but were very angry.
Your girlfriend came then and we all went to the lounge to play cards. Later you pushed your dad in the wheel chair all the way back to your room and asked me and your girlfriend to undress you. We said no that you needed the practice and you were getting much too spoiled. So you did it yourself without our help and did just fine. We left and your girlfriend decided to stay a little longer.
July 9, 1985
Last night you were in good spirits and we went out to the patio and you sketched a drawing of the hospital. Tonight we just played cards and you were doing much better at keeping your attention on the game. You were talking better now but were still confused on some words and couldn't remember things but we were still happy at how much you had progressed.
Your girlfriend told me and your dad that last night you had told her you wanted to get drunk. More worries and concern that the addiction had not been lost with the brain trauma. Later back in your room after your girlfriend had left you talked up a storm telling us all about what you would be doing when you came home. Then you became melancholy and started back on when would we take you home and if we didn't, you would steal a knife and kill yourself.
Well I didn't feel this was really a serious threat and so we just reassured you about how much we wanted you to come home, but other people still can't understand most of your words and you still can't shave alone and you tire very easily and you still became confused and lost in the hospital wing. These are the concerns of the doctors and they do not feel you are ready to come home. This seemed to satisfy you for the time being.
July 10, 1985
Tonight was a quite peaceful night and the three of us just talked and played cards. You were getting good and even won a game. You still talked about coming home but were not insistent.
July 11, 1985
You were asleep when we came tonight and it took us awhile to wake you up. Dad brought some more pictures and you did very good at recognizing people and places. You wanted to stay in bed and seemed very tired so we left early.
July 12, 1985
Tonight dad brought your 8th grade yearbook and you were very pleased. You were reading what your friends had written and I was helping you to pronounce the words. You were agitated at this because you thought you were pronouncing the words correctly not even realizing you weren't.
Yesterday dad and I had a meeting with your neuropsychologist and the social worker to discuss your progress. He said you were doing just fine but you still needed a lot of therapy because your level was up to an overall age of 10 years old at this time. You were showing signs of disinhibition and nonlogical thinking. They wanted to start a program of rewards to get your behavior pattern to an acceptable level.
You wanted to go to the rec room and watch a movie that was playing, so we did and you really enjoyed it. Later back in your room I asked you if you remembered what you had asked me to bring you the previous night and you said "clearasil" and I was happy you were getting your short term memory back.
July 13, 1985
Tonight you wanted to go to the lounge and play a game and after you sat on the couch with us and talked. You still wanted very much to come home and you talked about the therapist and nurses hurting you. We tried to convince you that they were not hurting you on purpose but only trying to help you get better.
We went back to the room and you weren't ready to go to sleep and wanted to talk some more. You said you missed your girlfriend since she hadn't visited that day. We talked some more and you finally were getting tired so we left.
July 14, 1985
Today they had a special barbecue for the patients and their families with singing and lots of good food. It was fun and you really enjoyed yourself. We left and came back later that evening and you finally wanted to shave. Your girlfriend and I left the room and I told her about the meeting with the doctor and when we got back you looked so much better. We all walked out to the patio and then you wanted to play some games so we went to the rec room. Dad and I had to leave but your girlfriend stayed a little longer.
July 31, 1985
I haven't felt a need to write everyday now since you are much better now and can remember things. Dad and I had another meeting with your neuropsychologist and he was real pleased with your progress. You had been upgraded to a 12 year old level and that with time you could be back to your old self again.
(Interjection from the present: 1996...boy were they wrong he never has come all the way back to his old self but at least he didn't stay at the 12 year old level).
Attorney Gordon S. Johnson, Jr.
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