Sunday, June 6, 2004 I was awakened at 8am by a phone call from Sean. “Roxi, something is wrong with Mom. She has a very bad headache, is dizzy, and is vomiting. I could tell by the tone of his voice he was worried and did not know what he needed to do for you. I told Sean that based on what he was telling me I thought he should call 911 but that I would be there in 5 minutes. I threw on some clothes and flew out the door. I was there within 5 minutes.
You were on the bathroom floor with your head hanging over the toilet. You repeated over and over how bad your head hurt and kept saying “What is the matter with me?” You had vomited and were sweating. Observing you, knowing your symptoms had occurred suddenly, led me to believe there could be more going on than a migraine headache. My first thought was you were having a stroke. You told me you had bent over in the pantry and had a head rush and immediately had experienced dizziness, headache and nausea. With your sudden onset of symptoms I felt you needed to be assessed by a Doctor immediately. I told you I felt I could not help you and that you needed medical attention right away. You agreed that it would be a good and told me to go ahead and get help. I called 911 at this point.
The ambulance was there in a short period of time. The paramedics and I were in the bathroom with you. I gave them the history to the best of my knowledge of what had happened. Greg had arrived by that time and was telling one EMT he thought you had food poisoning and he wasn’t feeling too good either. You had been at Ashley’s Graduation party the night before. Today, Sunday, June 6 was Austin’s High School graduation day.
You were in a lot of pain and extreme nausea. The EMT’s did their best to stabilize you and gave you medication to try and relieve some of your symptoms. You didn’t want to get off the floor of bathroom because you were so nauseated. They put you on the gurney and wheeled you to the ambulance. They suggested we follow behind, as I needed to bring Austin/Sean and myself. When they wheeled you out I was looking for Sean. I found him curled up on his bed crying. He was frightened, as we all were, as we did not know what or why this was happening.
You arrived about 8:30 -8:45am in the ER. Sean, Austin and I came together arriving right after you. We were in and out of the ER room with you because they at times had things to do for you so we had to leave. I called Nita, Bryan and Mom to let them know what was going on. Austin & Sean were visibly shaken by all. Austin called Pat to let him know what had happened. We sat in the waiting room kind of in shock and trying to absorb all that was happening. The not knowing was frightening. My gut feeling was that something serious was wrong because of your symptoms. My first thought was a stroke. You were very uncomfortable and still nauseated. They suspected a migraine at first and tried Imetrix, a drug for migraines, but that didn’t help. The fact that you didn’t get relief from medicine indicated that the next step was to check for further problems. The doctor ordered a CT scan.
The CT scan showed a large subarachnoid hemorrhage. When the Dr said the results of the CT scan they showed bleeding in the brain, my heart sank; I knew you were in serious trouble and this was life threatening. It was hard not to break apart at that time but knew Sean and Austin needed the support and comfort right now. But inside I was screaming, please God don’t take my wonderful sister from her boys and family. The prayers were nonstop from this point on. I was hoping Dad was by your side giving you his unending strength to somehow survive this. I know he was near you and his love and energy surrounded.
Once they discovered the very large hemorrhage the next step was for you to have an arterial gram to look into the vessels of the brain to determine the cause of the hemorrhage. This would give them the information they needed for the next step for your care. At that time they told us it would be awhile before we could see you again because you were going to have the arterial gram done. They stated next time we could see you was when they brought you to ICU after the arterial.
We talked about what you would want Austin to do on this day being it was his graduation day. We knew you were in good hands and at that time while we knew it was serious but we really didn’t know the full seriousness of your situation. We thought you would want Austin to attend his graduation if at all possible. We thought we would get Bryan’s video camera and tape the ceremony for you to see when you were able too. We continued to think positive that you were going to be fine.
I took Austin and Sean home to get ready for graduation. Pat met us at your house at about 11:30. He met us with tears in his eyes. It was good he could be there for boys, as they needed his support right now. You, their main support was not able to be there for them like you have been through out their lives.
Our plan for Austin’s graduation day had been for us all to meet for lunch at 11:00 a.m. and then we would all go to the graduation at the La Crosse Center. But that plan had changed now with all that had happened. Pat and the boys were going to go have lunch and meet us at the La Crosse Center. I left to go home and get in the shower. I was out of the shower when Bryan called from the hospital. He had gotten to the hospital after we left. He was calling from the hospital. Dr Davis had just talked to him after arterialgram. He told Bryan that your condition was critical and you may not make it through the night and the family needed to get to hospital. Again my insides were screaming silently for my precious sister to be spared and that you are given more time with your family.
The arterialgram had showed that you had 3 aneurysms on the left side, the biggest of the three; the aneurysm in the middle had burst. Another aneurysm was found on the right side. I called Pat’s cell phone and told him he and the boys needed to get to hospital as soon as possible. They had just sat down to eat lunch at a restaurant. Sean and Austin needed to be with you. Graduation would have to go on without Austin; his place was with his beloved Mom. At this point you kind of go numb and you go through the motions without really thinking about it. You can’t bear the thought of anything happening to some one you love.
We all met in the ICU waiting room. Pat, Sean, Austin, Bryan, Nita, Mom, Rocky (sonny) & Beth, Lynette & Jim were all in ICU waiting room. Pat’s wife Karen, Logan and Cindy arrived later in the afternoon to stay also. There was a lot of crying and hugging as we tried to console and comfort one another. It was unbearable to think it was possible we may not have another day with our precious Sue. No words can describe the sadness and emotions we were all feeling. It was like a bad dream, you wish you could wake up from. We were able to visit you for only short periods of time. The nurses/doctors didn’t want you to be over stimulated; as you needed to be stabilized from the traumatic brain injury you expierenced with the hemorrhage. We took turns seeing you and you were able to talk to us. At this time you didn’t seem to be hampered in your communication skills, a good sign that your brain was functioning normally. You were in a lot of discomfort and your eyes were very sensitive to light. The nurse put a towel over your eyes for comfort. We needed to see you and be close but also knew it was important for you to rest and have it quiet. The nurses in the ICU were so helpful and caring to you and to the family, they knew it was a difficult time for all.
They had to check you each couple hours for neurological symptoms, checking your pupils with a light that you didn’t like and asking you where you were, what year it was, who was president etc. You always seemed to have the right answers. You knew it was Austin’s graduation day and you were very concerned about that and that you had missed his graduation. Little did you know at that time no one else had made it to the graduation but it didn’t really matter because you were all that mattered at this time.
Beth and Mary Morrestater, your neighbors, came to ICU waiting room later Sunday afternoon and brought snacks, fruit and drinks for family as we waited our turn to see you and just be close to you. Ashley arrived from the Graduation ceremony. When she didn’t see Austin there for his diploma she knew something must have happened. You had been at her house Saturday night for her graduation party. Ashley’s Mom works at Gundersen Lutheran and she came too. She started a prayer chain with the nuns at her church. You had many people praying for you, some that didn’t even know you. Many people stopped by or called to see how you were.
Dr Jerry Davis, your neurologist met with the family early evening to discuss what the next step was for you and what your prognosis was at this time from the subarachnoid hemorrhage and aneurysms that were found. He explained you had 3 aneurysms on the left and one on the right side of your head. One of the aneurysms on the left side (the largest of the 3) had burst thus causing the subarachoid hemorrhage. Your condition at that time was critical but stable at this time. He said it was also possible you may not survive the night. You were stable but at risk for your condition to change. It was possible the other aneurysms could rupture. He explained the statistics of your condition, 50% die before they get to hospital, 25% survive surgery but go to a nursing home, 15% survive surgery, go home, but are unable to return to work and 10% recover. What we didn’t know at that time was you were going to be in the 10%. At that time 10% was low odds so our hearts were heavy and worried about your outcome.
When an aneurysm ruptures blood escapes suddenly from the aneurysm under pressure into the space around the brain. This space is normally filled with spinal fluid and is called the subarachnoid space because it has a fine lining known as the arachnoid membrane. Subarachnoid hemorrhage causes an immediate headache, neck stiffness, nausea and sensitivity to light. This results from blood mixing with the spinal fluid and irritating the lining of the brain. The aneurysm bleeds for only a few seconds before it stops. A clot forms at the sight of the rupture and seals off the tear in the aneurysm. Aneurysm rupture is divided into 3 categories, mild, moderate and severe. You were in the severe category. A person’s outcome from the rupture is decided in the first 3 minutes how they will be affected by the rupture.
Dr Davis said it was best for you to go into surgery in stable condition. The ICU nurses would be continuously monitoring you throughout the night. Your surgery would be to have a craniotomy to clip the aneurysms. They would only be able to fix the aneurysms on the left side. The surgery was scheduled for 7am. If your condition took a turn for the worse they would operate that night. Dr Davis hoped he would be able to wait until Monday so you could have more time to stabilize before going into surgery. He said the Neuro team he works closely with would be in operating room on Monday instead of on call personal. Not that the on call people aren’t good and would be a risk for you with them, but his team he works with all the time knows him and his procedures well.
Dr Davis said surgery would take 5-6 hours. They had found a subarchnoid cyst on the left side of brain where the three aneurysms were located. Dr. Davis said that this could work towards your benefit. The cyst was in place of brain tissue that would have formed. It was brain tissue that a person could live without and would not cause you any deficits. During surgery there was a risk of other aneurysm rupturing, excessive bleeding, having a stroke, all in all a lot of things that could put you at risk during the surgery. Dr Davis had said you had a few hurdles to conquer. He said you first hurdle was surviving the aneurysm rupturing; the next hurdle would be getting thought the surgery on Monday, and then getting through the recovery period after the surgery. He told us about the vasospasms that could possibly happen a few days or up to 2 weeks after surgery due to the blood on the outside of the vessels in the brain. There is an enzyme in the blood that irritates the blood vessels causing them to constrict and spasm. You could be at risk during this time for a stroke and the possibility of the aneurysm on right side could rupture.
We all knew you were faced with not very good odds and you were in a critical time and condition. You were in God’s hands and all we could do was pray that all went well for you the rest of Sunday and Monday during your surgery.
Many tears were shed, emotions shredded and sadness abounded on Sunday, June 6. A day that we had planned for a more joyous occasion with Austin’s graduation had turned into a nightmare. A helpless feeling and the thought of something happening to you, and our lives without you was truly overwhelming. Our hearts cried out for a miracle that all would go well for you. We were not ready to let you go. I wanted to stay the night with you on Sunday but Dr Davis suggested we all needed our rest too as had we all had a long day ahead of us on Monday. It had been and emotionally devastating day and our hearts were heavy as we prayed for the outcome of all of this to be positive. The nurses assured us that the family would be called if there were a change in your status. It was important and best for you at this point to have rest, quiet and not be over stimulated to ensure that you remained stable for surgery in the morning. The better the condition you went into surgery Dr Davis said the better outcome for you.
We all saw you one more time before we left the hospital Sunday evening. We had been with you all day. Pat, Karen, Logan, Cindy, Sean and Austin all gathered at our house to absorb all that had just happened and talk about what lay ahead. We ordered Pizza as most of us really hadn’t eaten much that day. Pat, Karen, Cindy, and the boys were all staying at a motel in town that night. It was good for boys to have Pat there for support during this difficult time for them. I’m sure they were feeling lost and frightened of the unknown. They would all be at the hospital for your surgery on Monday morning. Pat, Karen, Sean and Austin left around 9pm. We all were emotionally drained from all that had happened that day. A mixture of overwhelming sadness, being frightened of the unknown and the thought of losing you, was incomprehensible. We would all be at hospital early Monday morning to see you before you went to surgery.
Rod was flying out of Denver and would arrive in Minneapolis at midnight. He was going to rent a car and would drive to LaCrosse and would arrive about 3 a.m. Jackie and Mikel were leaving Florida on Monday and driving to WI. They would arrive later in the day on Tuesday.
I was tired but my mind was so awake with worries and thoughts of you. I lay down and slept for maybe an hour then woke up only to be reminded of the turmoil your life was in right now. I couldn’t get back to sleep so went downstairs to lay on the couch to wait for Rod. He arrived just after 3am. Was good to see him and have him there for support. We planned on being at the hospital at 6am to see you before the surgery. Rod went to bed for a couple of hours and I laid back down till 5am. I wasn’t able to sleep so got ready and woke Rod. As he was in the shower the phone rang to let us know your surgery had been moved to 9:00am instead of 7:00am. That was good because it meant all was going well at this point. We decided to come over early as we planned to do. We both were anxious to see you and couldn’t sleep anyway with all on our minds. It would feel more comfortable being closer to you.
Knowing Rod was here from Colorado I think triggered in your mind for the first time that something REALLY serious and potentially dangerous was happening. You had had a stable night and were doing ok. You still had bad headache of course and extreme sensitivity to light and smells. They were keeping a towel over your eyes. You couldn’t stand the smell of people’s cologne, it was making you sick. Your cognitive state seemed fine. You were able to answer the questions they gave you to check your cognitive state. Where your were, what year it was, who the president was etc. They asked you these about every 2-3 hours to check your cognitive status. You got to the point that when they started asking questions you just rattled off all the answers before they could get the questions out.
Uncle Richard came about 7am to see you before surgery. He was on his way to work and wanted to see how you were doing and see you before surgery. You had towel over your eyes but you knew him by his voice when he spoke to you in ICU. We all gathered in your room in ICU to see you before you went into surgery. The pastor was with us to say a prayer for you. It was a time your heart was in your throat, as we didn’t know what lay ahead for you. We prayed for all to go well and for you to return from surgery doing ok. At this time we couldn’t stop the tears that flowed. As we were hugging you, telling you we loved you, you piped up with “Ya bunch of mushheads, quit your damn crying” of course putting a lighter note in a difficult time. The pastor said her prayer and a silence filled the room. It was broken by your comment; “Can they slip me a couple of silicone breasts while I’m in surgery?” Of course the room filled with laughter. It broke the tension in the air. The pastor was standing next to me. I turned to her and said, “She’s a comedian.” Then the moment came when it was time for you to go to surgery. Many thoughts raced through our minds, the fear of the unknown. Would this be our last moment with you, and if you survive the surgery, what would the outcome be? We could only hope for the best. As they wheeled you out of ICU and down the hallway towards surgery you gave the thumbs up sign, and parade wave, indicating you would be fine. Even in difficult time you, your great sense of humor was there helping us all face this difficult moment.
Family and friends gathered in ICU-Surgery waiting room to begin our wait for good news. Rod, Nita, and Mom were here. Jaci & Mikel were on their way from FL. Pat, Karen, Logan and Cindy were with us. Paul & Aggie Heinzel, Beth, Lynette, Lavon, Mark Rogness stopped by. Many others you knew stopped to express their care and concern. You had many people praying for you.
While we waiting for your surgery to be done, Rod and I contacted the social service person to find out information on how we could help you get through this financially also. Although we were thinking positive it was possible your recovery would be a long time and we needed to begin a plan for that and get the process started. Tuesday Rod met with county folks to get information and turn in forms to begin the process of getting financial help for you. Was great news to hear you would receive medical coverage for your medical bills through the state. That was a blessing in disguise.
Approximately at 10:30 the nurse called from surgery to give us an update on your status. At that time they had found and clamped the first aneurysm. This was good news because it didn’t take them that long to find the aneurysm. The subarchnoid cyst on your left side where the aneurysms were located was a benefit because it took up space that would have been brain tissue resulting in less brain tissue for the surgeon to disturb. Dr said it was brain tissue that was of really no use so not to have it wasn’t a problem. Sean’s comment was that is why my Mom does funny things because she didn’t have all her brain tissue. He was being a comedian. He carries his Mother’s humor. Brain damage can happen sometimes from disturbing delicate brain tissue. We felt good to have this positive news.
The nurse called again about 11:30 to again update us on your status. They had all the aneurysms clamped at this time and were getting ready to close. This was great news as Dr. Davis had said your surgery would take 5-6 hrs. and it went much quicker than anticipated. We knew this was good news. Less time in surgery meant less chance of complications and less time under anesthesia. They don’t put you under real deep anestisia because they want you to awaken quickly to check you status to see if anything complications had occurred during surgery such as a stroke, which was highly possible.
In reading the surgery report the surgery room is cool and you were prepared for induced hypothermia to 33 degrees centigrade with a cooling blanket and a wet towel was placed on the skin. They temporarily occluded the middle cerebral artery trunk for 16 minutes. With all the aneurysms clipped the area was irrigated and no bleeding was seen. So far they felt there had been no complications. We knew you have survived the second hurdle. We were thankful for this and knew that you still had other hurdles to get over. You would go back to ICU to recover from surgery and wake up. That was the next hurdle to see what your status was when you woke up. If you would have had brain damage or a stroke during surgery it would be noticed at this time. And of course you still had an aneurysm on the right side that wasn’t fixed. This was a complication that right now couldn’t be fixed. You got out of surgery and back to ICU about 1 p.m. When you were stable we would be allowed to see you. We could now breathe a sign of relief that you made it through the surgery.
We were anxious to see you but also knew we needed to do what was in your best interest at that time. We knew you were in good hands so we waited until they said it was ok to see you. When we saw you, you were having pain but coherent. You had a bandage on your incision. Under that you had an L shaped incision and a portion of your head had been shaved bald. They continued to check vital signs, pupils (shining a light in your eyes that you didn’t like very much) and ask you questions to check your cognitive function. They would and had been doing this every 2-3 hours round the clock since you got in ICU the day before and it would continue for sometime. Rest right now was important so visits were limited. You had gotten through the surgery and things were going good so far. Our prayers had been answered. We could only hope the rest of your recovery would well. You had gotten through the second hurdle.
Tuesday your nurse, Kathy Hageseth, shaved the rest of your head at your request. You had said your hair was all knotted and it might as well be cut off too since you were bald in one area. Baldness does not flatter many people, but you were the exception. You had a beautiful shaped head and looked very pretty bald. Your hair was a small issue in the scope of all that had happened. That would grow back. Had you not survived we couldn’t get you back. We were all so happy you were given the gift of life. You were most concerned at this point with the fact that someone had broken one of your new fingernails. You had just had your nails done and you said they owed you money for that. They needed to remove one nail to hook up the oxcimeter that measures the oxygen in your blood. The oxcimeter is hooked on to a finger so they needed to remove your fake fingernail.
You were having some nausea and they were changing medications to try and help you with that and keeping your pain under control. Kathy Hageseth was wonderful in caring for you, as was the other staff in ICU. You had round the clock care that was great. The ICU staff was very caring and compassionate people not only for you but the rest of the family also. They answered our many questions and phone calls about your condition. Each day we saw improvement and amazement as to how well you were doing for all that you had just been through. But we knew you weren’t out of the woods yet and that there still could be some complications that could set your recover back. They continued to monitor your cognitive state asking questions that you grew tired of answering.
Mike and Jackie arrived late Tues afternoon. They had left on Sunday from FL. They were anxious to see you. We got their truck unpacked then came to see you. Jackie’s plans were to stay for a week or 2 depending on your needs. Jackie, Mikel and Rod stayed with me. Was nice to have them there as we all needed to support each other and figure out what needed to be taken care of for you.
Uncle Richard came each day to see you or check in with nurses about your status. One day in ICU you had your back turned to the door. Richard and I were both standing in the doorway because you were talking to the nurse. She was asking you the usual question they asked you to check your status. Questions as “Where are you?” What year is it? They continued to ask you these every few hours to check the cognitive skills. Richard then spoke a few words. You said without turning around and looking at him, “There’s my dentist right behind him. His voice was familiar to you. This was a good sign. When you referred to him you could only think of his name as Dick, instead of Uncle Richard.
Rod left on Wednesday, June 9th. You were stable and doing well providing what you had just gone through. Had things not gone well he was prepared to stay longer and cancel some things he had going. He would be returning on July 5th for family camping trip that was planned for that week. We all hoped by then that you would be able to go camping but with the seriousness of your situation felt that may not be possible.
You had gotten through two hurdles the original aneurysm rupture and the surgery. Dr. Davis told us about the possibility of vaso spasms that could happen anywhere from 3-10 days following surgery. If these were to happen, this would be another hurdle for you to get over.
Austin & Sean stayed with Pat until Saturday in a hotel. The boys wanted to stay close to you instead of going back with Pat to Chicago. They were overwhelmed and frightened with all that had happened to you. We would just take each day and go from there. Jackie and Mikel were going to move from my house to your house and stay with the boys so they could be in their home. They needed to be in the comfort of their home and try to regain some stability in their lives. This would help them cope and sort out all that had happened to their beloved Mother. Your life and theirs had taken a major turn. Some opposition was met from Greg not thinking this should be done. But what was best for the boys and him were two different stories. It was their home and they belonged there. It was not a good situation for any of us but Greg was thinking of his needs and not what was best for everyone else involved. He did come and get his things out. It was yours and the boy’s home, not his to make decisions who would stay there. You had told me the night before the vasospasm started that you had wanted to break things off with him and I don’t think he realized your family knew this. He meant well in some ways but most of all he was thinking of himself. We had the locks changed so there would be no further problems.
I told the boys that if they had questions or concerns regarding you or your care they needed to ask me or someone that could get them an answer. If I didn’t know I would find an answer for them from Dr or nurse. Not knowing or understanding creates fear and uncertainty. They needed to be reassured and kept informed of what was happening with you.
In the days that followed your surgery you continued to improve. You had issues with pain and they tried different medications to help you get your pain under control. You had nausea and didn’t have an appetite. We knew your recovery would take time and have possible complications along the way. Each day we were thankful that you were here. The road to your recovery was just beginning. The care you received from the ICU staff was wonderful. They were so caring and compassionate to your needs and the needs of the family. They answered our many phone calls and questions each day regarding your status and progress.
June 15th your staples were removed. Your progress had steadily improved. June 16th you were moved to 3 Center. You were able to get up with help and use the bathroom. Your legs were weak as they would be after lying in bed for 10 days. Your balance was off also from all that had happened. You were glad to be able to be more mobile. Visiting hours weren’t restricted but also you didn’t need to be overwhelmed with visitors either. Rest was still vital to your continued recovery.
We had set up a meeting with the caseworker for June 17th. Rod had meet with caseworker before he left to get the application process going. You had to be present for the presentation of the information and be able to sign some papers. This would give you medical assistance and food stamps. You didn’t qualify for financial help because you had a 13,000 annuity. Jackie, Austin, Sean and I were present for this. I would be the contact person for you while you were recovering.
Jackie and Mikel were leaving 6/17 to drive back to FL. They were going to take Austin & Sean to Pat’s home in Chicago and then continue on. Pat invited them for supper and offered for them to spend the night with them. Jackie & Mikel had dinner with them then left to begin their trip back to FL. The boys were going to stay with Pat until 6/27. You were doing better so they were comfortable with leaving at this time.
Friday, June 18 I visited with you for quite some time in early evening after I had finished work. It was the first time we had a chance to chat for longer than a few minutes at a time. The ICU visits were short because you didn’t need extra stimulus. It was and still crucial that you didn’t have a lot of stimulus and got your rest because you were still recovering. I could tell you were getting tired so I left. I was thankful for time to talk with you.
When I got home that evening Beth Rock called me that she was concerned about what she had seen and heard while visiting Friday afternoon. Greg had been there during the same time and seemed to be pressuring you regarding your relationship and other issues. Beth felt it was stressing you and was upsetting you and she was upset by this. This was something you shouldn’t be bothered with right now. You were not in any frame of mind to be worrying about anything else other than getting well after this very serious operation and situation. We both felt Greg was putting his needs first as he seemed to be doing all along. Beth & I were concerned about the stress it could cause you and wondering if this could hamper your recovery. Ironically the next day was when your vasospasms started and you were moved to ICU.
While you were on 3 center you were experiencing low sodium levels and they were correcting this. Dr. had told me those people that have problems with low sodium tend to be more susceptible to getting vasospasms.
Saturday, June 19th a nurse called me at 8a.m. telling me that you had been readmitted to ICU that morning because they suspected you were experiencing vasospasms. My heart sank as I didn’t want to hear that news but knew you were strong and a fighter. I immediately got ready to go to ICU to be with you. Dr Michael LeBeau the Neuro resident was the one that readmitted you to ICU. He had been a neuro resident when you came in June 6th.
In reading your clinic notes after the fact it states that at this time a shut was put into to prevent hydrocephalus (which is water on the brain). Something that was not told to us but we weren’t there at the time the vasospasms started. They called me at 8am and you were already settled in ICU. If they told you, you would have not known.
You were in the back area of the ICU. You were somewhat disoriented and did not knowing what was going on. They were pumping up your blood volume so they could keep the blood flow strong to the brain. Vasospasms constricted arteries and was possible it could cause complications such as a stroke. They did a CT scan to check and see what was happening. I stayed with you all day till evening. You needed help eating and I felt you needed someone there to reassure you. The doctor had told us this could happen but we so hoped it wouldn’t happen to you. You had been doing well but vasospasms Doctor said could happen 2-3 weeks after surgery. It was serious and another hurdle you had to get over. You had survived the first 2 hurdles; I prayed you would get over this one.
You were very sick during this time. You were disorientated and not wanting to eat. They continued to keep your blood volume high to keep pressures up in the arteries. I felt this was a more difficult recovery than from the surgery itself. One of us tried to be with you at meal times to try and get you to eat something. They were looking at putting a feeding tube down your nose to get some calories into you because you were not eating enough. The nutrition department was so helpful and trying to get you things you liked to eat. We had little success at times getting some food into you but majority of the time you didn’t want to eat or drink anything other than water. When I tried to feed you weren’t a happy camper. Many times you stated “this is gross”, covered your mouth or swore at me. I didn’t take it personally because knew you really were unaware of what was being said. You were reacting to a difficult situation.
They did CT scans quite often to check your status and pressures. You seemed to be staying at the same status. You weren’t yourself and I felt it was a very difficult to see you in this state. With you not eating you were loosing weight and they were concerned for that. A body needs nutrients to heal and you were not getting enough. We tried orange dip, buttered cheerios, ice cream, Gatorade, etc. anything we could think of that may have sounded good to you. I made you your favorite muffins and brought. You did eat some of those.
I would come up to help feed each noon when I got done work at school and at supper. Nita also came to assist you a few times with supper. Once Sean and Austin got back they too assisted in trying to get you to eat. One day I arrived to help you eat and you were trying to climb over the bed rails. I asked you what your were doing and your response was “I gotta get out of here!” I’m sure that is just what you wanted to do.
It had been some trying days and I am sure you were tired of being in the hospital. A person’s privacy is invaded in the hospital and I know you were growing tired of tests, Doctors, nurses, and being confined to a hospital room. It was at this time that they moved you to a room right across from the ICU desk so staff could monitor you. They didn’t want you to try getting out of bed and hurting yourself further. You were getting restless because you were improving which was good. The next day when I called to check on how you were doing the nurse said you had your makeup bag and were putting on makeup. Nurse said that should keep you busy for awhile. The staff in ICU again was very helpful and caring to you as they were to our family.
To ensure your recovery was not hampered and no undo stresses were put on you the nurse and family felt that we needed to limit visitors to family only while you were in ICU. We set up a password to use so no one other than family that knew the password could call or get into ICU to see you. Anyone else that would attempt to visit you would be asked to leave. Beth Rock was able to check in on you too. At this point if it hurt people’s feelings it wasn’t important because your recovery was more important. People needed to understand that what was best for you was the top priority now. It wasn’t always easy for you to find the words so it was less frustration for you trying to visit with lots of people. Rest and nutrients is what you needed to continue the healing process.
During this time Austin & Sean were in Chicago with Pat. Was best that they were there it was difficult for us all to see you in this state. It would have been more frightening to them to experience this in person. I kept them informed of what was going on with you and your status. Austin called one noon when I was with you in ICU during your lunch time wondering if we were telling them everything. He was worried that we weren’t letting them know what was really going on. The hard thing was you couldn’t talk on the phone because you were unable to at this time. I assured Austin we were sharing all information with him and Sean that we knew and that you were in good hands.
I had spoken with Dr McDonald another neurologist, Polly a PA and Matthew a PA that work with both Dr Davis and Dr McDonald. They kept us well informed on your status. It really was a waiting game to see how you tolerated the vasospasms and if you were responding to the treatment. You had some good days and bad. Was good that you didn’t remember those days as I feel they were worse time you had during your recovery. You began to slowly come out of the state of confusion the vasospasms had caused. Your appetite wasn’t the best but was better. You were tired easily and were ready for bed early each night.
During this time Vicki Monk began to visit you regarding your speech. At first you were annoyed with her but I think was because speech was hard for you and remembering words to talk was so frustrating for you. She was challenging your speech too and that could have made you frustrated too. Vicki was a true inspiration to you in your recovery. She took great care of you and always told me what a joy you were to know and work with. I couldn’t agree with her more. Vicki was very good at her job as a speech therapist but also a great caring person and what you needed at this time.
Austin & Sean came home on 6/27 from Pat’s. They were going to live with us until you got home. You were so happy to see them and they were very happy to see you. I know they had been worried about you. You cried when you saw them. Their presence would be helpful in giving you support and motivation to get through this tough time. However you liked to call them both Sean instead of Austin and Sean.
Your status continued to improve and on Wednesday June 30th they moved you to 3 Center. You went to Physical Therapy and Occupational Therapy Wednesday and Thursday. Friday, July 2 they felt you were ready to be moved to the rehabilitation floor to continue your care and get you ready to go home. It was an exciting time because we knew you were closer to coming home. In rehabilitation you needed to be assessed to determine your functionality with daily tasks at home and taking care of yourself. This would help them to determine how you would be able to function on your own at home. You would rather have gone home right at that moment.
Your room was right above the helicopter pad. The first night you were there you said you didn’t sleep much because the “whirlyhop”as you called it, kept you awake. The helicopter was taking off and landing you said all night. We wrote the word helicopter and drew a picture on your black board in your room so you could remember how to say it.
Your bed had an alarm on it so every time you tried to get up or move away from the bed the alarm went off. You didn’t like that at all. But according to your hospital notes it stated you had poor balance and difficulty with mobility due to subarachnoid hemorrhage and hydrocephalus. You hadn’t done very little walking since the day you were admitted June 6th. You needed to get steady on your feet before they would let you venture out on your own. You were growing tired of being in the hospital which none of us could blame you. You had been there for 3 weeks and five days. The alarm on the bed was used for first couple days. The alarm alerted the staff that you were mobile. They surely didn’t want you to fall and risk hurting yourself further.
You were very apprehensive about being on the rehabilitation floor and questioned why you needed to be there. I’m sure you felt like you were never going to get to come home. It was important for you to be on the rehabilitation ward. The seriousness of what you had just experienced meant something that they couldn’t just discharge you home without knowing for sure you were capable of taking care of yourself and performing daily tasks at home. We all needed to feel comfortable that you were able to be safe at home also. Your blood pressure they were still monitoring your blood pressure and trying to get the right medication and dose for you. This all had to be in place before you could be discharged home.
I was able to bring you street clothes for you to wear instead of the lovely hospital gowns. Your first comment when I brought your clothes from home was that they smelled. They smelled like smoke and you didn’t like it. You said you were going to wash all your clothes when you got home to get the smoke smell out.
You began to draw and doodle when you were on rehab ward. A sigh of relief was felt that your wonderful artistic talent had not been hampered. If that had been taken from you it would have been truly devastating. One of your first creations was the title for this book, No Voice, depicting your state at that time. You were able to speak but the correct words were hard to find at times. Your word bank had been damaged in aneurysm rupture and/or the period of time you were having the vasospasms. This is the word bank that stores all the words you have learned. So now you faced the task of relearning many of these words. You struggled with reading. Your received many lovely cards with kind and supportive words that you were unable to read at this time. We read them to you but also your verbal skills were still hampered.
Rod & family arrived on Monday, July 5th for a week of camping at Hatfield. He was anxious to get back to LaCrosse to be with you again. When he left in June you were just a few days out from surgery and now you had made good progress and were preparing to go home. You would have been happier to be camping with them but there would be another time. The most important thing now was that you survived your aneurysm rupture and you were on the road to recovery.
Wednesday, July 7 we had a family meeting to discuss your status and when you could be going home. Rod, Nita, Austin, Sean, Mom, myself were there. Along with the family members the appropriate people that needed to be there to discuss your status and prognosis. At this time your diagnosis was status post subarchnoid hemorrhage with aneurysm clipping, Aphasia and labile hypertension. Labile hypertension is when Blood Pressure is elevated on initial exam but normal on other readings.
Aphasia is an impairment of the ability to use or comprehend words, usually acquired as a result of a stroke or brain injury. Aphasia is an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.
All but Mom and myself were at Hatfield camping and you commented how they smelled like a campfire and you liked that smell. You wished you could be there camping too.
The Rehabilitation staff felt you were doing well. When you came to the rehab ward your initial rating on your skill level was a total of 85. July 7th your rating on your skill level was 100. Your discharge goal was 113. So you already were very close to your discharge goal. They decided it would be best for you to try a weekend pass to see how you were able to do in your home before they sent you home permanently. Of course you wanted to go home and stay home but this weekend pass needed to be done first.
I picked you up Sat morning to take you home. You were anxiously awaiting my arrival when I got there. You were dressed and ready to go. I couldn’t blame you. You had been in hospital for 6 weeks and you were anxious to go home. You were happy to get to your home and the first thing you did was start pruning your flowers. You wanted to weed and clean up your flower beds. It was a nice warm day to be outside. Your first time in weeks that you were outside so last thing you wanted to do was to be inside the house. I spent all day with you helping you get things settled and cleaned. And prepared some food for you to have. I left about 9p.m. that evening. The boys would be home with you and you felt you would be fine and didn’t need me to stay the night. I’m sure Sean and Austin felt good to have their Mom home. I also felt comfortable that you would be fine judging how you had managed during the day. I would return at 8am to check your blood pressure and make sure you got your blood pressure medication. Sunday was a good day for you at home too. You had to be back at the hospital at 8p.m. Nurses asked how all went and told them the boys and I thought things went well for you at home and we felt you would be just fine at home.
Monday, July 12th was a great day! You were going home! You were in the 10% survival rate for the rupture of an aneurysm and lucky to be going home with just some deficits in word finding. You had amazingly survived a horrific episode that majority of people die from or have great deficits from. How lucky we all felt that we had you in our lives and you were given a second chance in life, more time with your children and family. The road ahead was still going to take some time for you to work on speech and word finding but now that you would be home and it would help to be in the surroundings of your home and with Sean and Austin.
At this time Drs didn’t want you driving just yet, but down the road had felt that you would be driving again. You would continue to do speech on an out patient basis a few times a week with Vikki Monk which would be followed by staff in neurology.
You saw Dr Michael LeBeau for a follow up on 8/2/05 to see how all was going and follow up with blood pressure medication. He said when he saw your name on his schedule for that day he was unsure how he would find your status. Last time he said he saw you in ICU you looked like the life had been sucked out of you. He was amazed at how well you were doing and your speech. He said your recovery went so well from the craniotomy that they joked you would be the first “out patient craniotomy” He told you the recovery from this is like losing weight, the first few pounds come off fast and then you can hit a plateau. Told you not to get frustrated and give up but just work harder to get past the plateau. Dr LeBeau was very caring and took the time to listen and discuss your situation with you. He said regarding the length of your recovery no one can tell the length of time the brain will take to heal.
On August 20, 2004 you saw Dr Greg Pritchett and Dr. Stephen Porter. You had 2 hours of testing prior to seeing Dr. Pritchett. This was the same test that you had had when you were on the rehab floor in July. This test was for reassessment of your cognitive status and documenting changes in functioning. Evaluation results suggest that you appeared to be improving in your expressive ability and were becoming more aware of word substitution errors and making better efforts at self correction. The test results continue to show a lateralized pattern of impairment predominantly involving verbal cognitive and intellectual functions that is consistent with what happen. Your nonverbal abilities appeared to be relatively well preserved and unaffected. At this time he felt even though you had demonstrated significant improvement he thought you may have considerable difficulty returning to a waitressing job. He felt if your work could be directed more towards nonverbal types of tasks that this would be helpful. Dr Pritchett felt your nonverbal skills were fine and graphic arts may be ideal for you to pursue.
Dr Pritchett’s testing showed you had trouble with labeling things, recognizing objects (did better when given clues) and recognizing numbers. Your nonverbal skills were fine. The verbal skills are what you were having problems with. This area was affected by the rupture of the aneurysm. You were understanding commands better at this time.
He stated women have more blood vessels in their head that take up the slack for injured ones, so we have a better prognosis for recovery.
You have what is called “Tip of the Tongue Syndrome” You know the word but can’t say it. The area injured by the aneurysm rupture was the brain’s dictionary and this is why the words were difficult to say and remember. Dr Pritchett felt your cognitive state was fine.
Your appointment with Dr Porter on 8/20/05 was to assess your work status. You were given the Ability Profile on 8/27. This test was developed by the department of labor and measures skill and ability in areas associated with success in the competitive work force. That would give you the level of skill in your work as a waitress. This would help determine your return to work status or if you needed to apply for disability for a period of time while you were still healing. At this time the results of the test overall showed that you did not meet the minimum criteria to be expected to be competitive in a waitress position. You were too easily confused on the math items and would probably be overwhelmed in a busy restaurant/bar type environment. Technically at this time, they also did not meet the minimum criteria to be expected to be successful in the occupational group that includes graphic artists.
On the verbal abilities scale, you scored at the 9th grade level.
Your performance on the verbal comprehension placed you in the lower average when compared to those with a similar education. When compared in with those of a similar age you scored in the 33rd percentile.
On the working memory scale you scored at the 1st percentile. When you tried to keep track of more than 1 or 2 items you became easily confused and overwhelmed. Auditory sequential memory and auditory working memory scored in the 2nd-3rd percentile.
Fluency retrieval which would address the aphasic (an impairment of the ability to use or comprehend words) traits in a practical situation like work was at the 6th grade level or 10th percentile. Rapid naming, for example naming items off a menu, was at a level that was below the 1st percentile.
On a reading comprehension task, you scored at the 7th grade level or 14th percentile.
Dr Porter explained to you also that you were only 3 months out from your aneurysm rupture. It may be possible that you could not return to the work force for another 9 months. He was going to contact Sonja to see if you could begin working doing tasks such as clean up work, dishwashing etc to begin.
Dr. Porter felt at this time it would be good for you to return to work and if you demonstrated that you were not competitive in the work force it would assist with filing for disability.
On 8/23/05 you saw Dr Halter (Halter Top) as you called her.
She felt you were doing fairly well in terms of adjustment and was were functioning quite well. Said you continued to demonstrate impairment predominantly involving verbal, cognitive and intellectual function. Nonverbal abilities are relatively well preserved. Stated you were improving in your expressive ability and becoming more aware of word substitution errors and make better efforts of self-correction.
You told her you were frustrated that you couldn’t drive. You felt you could identify road signs and were capable of driving safely. Dr Halter ordered a pre-drivers screening assessment. for you to have in Occupational Therapy Department. You were having difficulty with phone messages if someone left a telephone number for you to return the call. Also you
couldn’t transfer the message from what you heard to paper. She felt your aphasia was improving but not resolved.
On 8/24/04 you saw Dr. Jerry Davis the neurosurgeon that did your craniotomy. He felt you were doing extremely well. Said your surgery was enhanced by a subarachnoid cyst that made exposure of the carotid system much easier. He had to do no retraction to get the aneurysms. The larger of the middle cerebral artery aneurysms was the one which ruptured. Being 3 months out from surgery your only deficit was the word finding difficulties but no other deficits. You did have some loss of feeling in your “snacking” hand. You had lost a few chocolate covered raisins due to the loss of feeling. He explained the percentiles of your 10% survival of this aneurysm rupture. He said there was a plan for you to have survived this. He was very good at listening and answering our questions. I thanked him from your family for saving your life. Our prayers had been answered, you were in his hands and he gave you another chance in life. He felt you were a good candidate at this time for the coiling procedure to fix your aneurysm on the right side. At this point we were referred to Beverly Aagaard at the University of WI for her opinion
On 9/7/04 your saw Dr Haler Top to go over your pre-driver screening results. She said you did very well and felt it was safe for you to begin driving. You were advised to avoid distractions while driving. Was recommended that the first few times you have an adult with you when you drove. Was a frustrating time for you not being able to drive. But really a small thing when you look at what you had just been through and that you were lucky to have survived. Most people die or aren’t able to drive at all again. You were one of the lucky ones in the 10th percentile.
Dr. Halter Top felt your aphasia was improving and your blood pressure was well managed on the medicine you were on. You were to continue with speech therapy until you plateau in your progress.
Vicki Monk your speech pathologist felt you were making good progress.