This narrative is about my mother, Donna Rae Pearson, age 57, and her aneurysm experience. My mother was a healthy, active, vibrant, loving and funny, woman at the time of her surgery. She has three children - Danny age 40, Christine (deceased at age 29 in 1988) and myself age 32. My mother also has/is raising my sister's children Ryan and Aubrey, ages 18 and 16 respectively. My mother is by far the strongest woman I have ever encountered. She is my best friend and it is with much love and pain that I wrote this narrative.
I had been visiting from California during Thanksgiving week 1997. While I was there my mom complained of a headache all week, but she attributed it to sinus problems (which she has had for years). The day before I was to go home she was fairly lethargic and only wanted to nap all day. This was somewhat unlike her since I was in town she would usually want to visit with me the whole time. As we were retiring for the evening she came to me and complained of the "worst headache" she ever had. She also stated that the right side of her head was numb. I tried to get her to go to the emergency room, but she declined stating she did not want to ruin my vacation. She promised that if the pain persisted she would go to the emergency room the next morning.
When I got home after the flight from Illinois I phone my mother. By that time she had been to the emergency room and had a CAT scan where they discovered that she had a giant aneurysm on her right carotid artery that was pressing against her optic nerve. The wanted to admit her immediately, but she was not ready - she needed time to absorb what the implications were of such an illness. At the time I knew nothing about aneurysms, but I was terrified and so was she.
As an immediate form of treatment they put her on double-to-triple dosages of high blood pressure medicine and scheduled her for an angiogram. She took many, many tests in the next couple of weeks after the initial finding and it was determined that due to the size, location, etc, they would have to use hypothermia while doing the operation. This meant my mother would be clinically dead during part of the operation. It was scheduled, then rescheduled, and then rescheduled finally for January 30, 1998.
I am fortunate in that I work in a hospital and was surrounding by doctors that could answer, albeit as best as they could, questions. They warned me of the chance that she could "stroke out" or worse yet die during the operation. However, if things went well they said that I could see her home within ten days. One doctor where I work was even kind enough to contact the neurosurgeon in Illinois when he would not answer my calls. Also, the doctors I worked with "warned" me not too expect too much of a bedside manner with the neurosurgeon - believe me, this tiny, tiny bit of information went a long way.
I arrived in Chicago the evening before my mom's operation. I spent time with her in the hospital while they ran the remaining tests. One being a stress test on her heart to be sure that she could withstand the hypothermia unit. It was hard for my mom and I could tell she was scared. She had called me (and my brother) a couple of days before the operation asking me how I would feel if she backed out. I supported her; however, her mate and her ex-husband (my dad) were pushing pretty hard for her to go through with it. It was also hard in the physical sense in that she could have no IVs or blood draws on her left side due to her bout with breast cancer. It was hard to see her so scared, but I tried to give her my strength. I bid her goodnight and told her I would see her tomorrow after the operation. I told her not to worry, that I would go to her house and take care of everyone and everything - you see, she is raising her grandchildren ages 15 and 17. I told her I loved her and that I believed in her and her strength.
The next day she went into surgery at 5:30am. George (my mother's life partner) and I waited in the waiting room the duration of the operation. The waiting room is a strange place, so many people worried, scared, or not even knowing what to think. You are bonded together with strangers out of fear and hope, but there is little comfort in it. At 9:30pm the surgeon's assistant came in to tell us that mom came through the operation fine. However, due to the size of the aneurysm, they ended up clipping it on each side, which would in the immediate restrict blood flow to the left side of her brain. They were hoping that the brain could learn to re-map itself quickly. They also informed us that they had left a bone flap out of her skull to give the brain room to swell if needed. You see the hypothermia causes a greater amount of swelling in the brain than if she had just had regular neurosurgery. We were shocked and concerned, but very flippantly we were informed that it is not something we should be concerned with at that time. We should be concerned with whether mom was going to make it through the night or not.
I went to see her in the ICU. I don't know why but I had this image in my head that she would be lying there with a big white turban on her head and sleeping like a baby. I was not ready for what I encountered. I saw my mother lying there on a bloody pillow with her wound totally exposed. She was strapped to the bed so that she would not try to touch the wound on her head or the wound on her leg from the hypothermia unit. She was hooked up to so many machines, but I especially remember the respirator. I started to weep and I left the room because even though she was not coherent I was afraid she would know my reaction and that would be worse for her. I came back into the room in a few minutes and they were running the normal regiment of tests - raise your right arm, squeeze your left hand, etc., etc. She seemed to be responding fine. I came close to her and told her that I loved her and that I was proud of her. It takes an incredibly strong person to go through that sort of operation.
The next day was Saturday. She seemed to be doing OK; however, the doctors began to notice a slight weakness on her left side. As the day progressed, the weakness progressed. We were beginning to get worried, but the doctors assured us that steroid treatment would help this condition. By Sunday she was moving the left side at all. I had gone home Sunday to make dinner for the kids when the call came from the hospital that they were going to install a shunt for fluid drainage from the brain. It was a gruesome sight to see her in this condition, but I remained so naively positive. The doctors had me sign a release on Sunday evening to go back in to try to reduce the swelling, but again decided against it for steroid use instead.
On Monday morning the call came in from the doctor that mom was in very bad condition and asked for a release to go back in and cut out part of her brain to help reduce the swelling. When I questioned about the part of the brain they were cutting out I was told, "We will be taking a slice from the right frontal lobe of the brain, no need to worry since, as humans, it is a part of the brain we do not use very much." Yeah right. I gave the consent, pulled the kids out of school and rushed to the hospital. The doctors came in several hours later to say that the operation was successful. They told us that the worst side effect was that mom would not experience the extreme highs and lows of human emotion.
The next three weeks kind of blend together for me. For nine days my mother could not breathe on her own. I prayed and prayed that she would start for each day she was on the ventilator was causing more damage to her vocal cords and swallowing abilities. I sat next to her bed religiously; reading to her, talking to her, exercising her limbs anything to stimulate her. When they finally took out the breathing tube the first words she mumbled were, "This really sucks." Eventually they went back into her head and replaced the bone flap and installed a permanent drainage shunt. Over the course of the next three weeks not much changed about her condition. She slept most of the time and was barely responsive to the nurse's commands. It was at about 18 days they finally decided to start putting her in the cardiac chair to get her body used to being in the upright position again. It was also at that time they decided to put a feeding peg directly into her stomach since she was not responding to even taking small sips of water and being able to handle small ice chips.
After the three weeks I had to return home to California. I bid her goodbye and told her I would see her as soon as I could. It was hard to leave, but there was nothing I could do for her at that time. She stayed in neuro ICU for the next 5 weeks and then was transferred to a rehab center. Unfortunately, after only 1 week the doctors at rehab decided that she was not ready for the intense rehabilitation that they offered. She was put into a hellhole of a hospital. She started to learn to eat again, though she was very confused most of the time. I went to visit her for a week in the middle of April and she looked terrible. I found her strapped to her wheelchair, alone in the hallway when I arrived. (I won't go into many details about this hospital, but I will mention that they dropped her twice and one of those times was in the shower where she hit her head so hard she still has discoloration!)
After 6 weeks she was released again to the Rehabilitation Institute of Chicago. She was there for 5 weeks when they felt that there was nothing more that they could do for her. It was at that time I went home again for the first week that she was released from the hospital.
She has been home for 15 weeks and I was just back to see her again about two weeks ago. She was going to outpatient therapy 3 times a week, but cannot physically handle it so now it is only 2 times a week. Her short-term memory is shot. She only knows I was there to visit recently because I sent her a card telling her how wonderful it was to see her. She hallucinates people being there that are not. Everyday she goes through the pain of realizing that important people in her life are dead like her mother and her daughter. She has no use of her left arm and is just now beginning to take awkward, baby steps. She seems to have no field of left vision in either eye. She cries all the time. She can't handle loud noise or the slightest bit of stress. She cannot attend to the most basic of duties for herself like the bathroom or dressing. She hates her life and wishes she were dead. I don't know how to comfort her. I tell her that she is getting stronger each day and that with time she will continue to get better, but she cannot comprehend it.
I am so filled with emotions about this tragedy. My mother did not have a stroke and I feel like somehow that this could have been prevented. I feel like the doctors took away my mother. They did not do the procedure they told us they were going to do so there was no need for the hypothermia, but they used it anyway. They gave us no inclination that mom could end up this way and whenever we pushed for answers about recovery our heads were bitten off and we were rebuffed. The aneurysm had begun to calcify so perhaps she was in no danger at all. I feel lied to or at the very least damn stupid. Why did they not respond sooner to her brain swelling? My mother was a very active, relatively healthy woman who had some headaches and now she is a mess. I know, I know - I should feel blessed that she is even alive I am ashamed to say, but I do not feel blessed because I hear and see the agony with which she lives with each day. Perhaps in time she will continue to get better, but the doctors have warned us not to expect too much more.
I am sorry if I sound cold, but I have so much anger and regret. All I want is peace for my mother and it seems like right now that will never happen for her again.
Thanks for the space for vent.