Marie stayed in a regular hospital room for a week. She spent Thanksgiving 2000 in her room. They served her ground turkey. It wasn't in a patty shape like a hamburger. It was small chunks of groung up meat. It did not look appetizing and she said it didn't taste very good. Since she hadn't eaten solid food for so long and since she had trouble with mother nature, they wanted to play it safe with her diet. Her mother did sneak her in a dish of spaghetti and homemade sauce. I'm sure the nurse saw it, but she didn't say anything. Happy Thanksgiving, Marie.
The doctors wanted Marie to go through rehabilitation. Her short term memory wasn't good, she still struggled with using utensils, and her balance was bad. She was scheduled for speech, occupational, and physical therapies. This hospital has a Rehab unit attached to it, and it is used by both inpatients and outpatients. After a week in a regular ward, she was cleared to be moved to the rehabilitation floor. This would allow her to have intensive therapies each day.
Physical therapy would help her strength and balance. Occupational therapy would help her day to day functioning. Using utensils, getting dressed, bathe, and other daily life issues. Speech therapy would help her the short term memory and word searching ability. She now had problems finding appropriate words. Her basic math skills were gone. Money was a foreign concept. Her writing became almost illegible. If you had her write her name, it was so small you couldn't read it. I don't mean half the normal size, or even a quarter of the size. I mean way, way smaller. Even she couldn't read her own writing. She needed rehab and she was going to get it, but she was not happy about it. According to her, there was nothing wrong. Everything was normal from the small writing to falling over when she walked. She developed into an angry person that did not want any help. She wanted to go home.
Looking back on this time period, I have to comment that when Marie first awoke from the surgery, she didn't seem to have any of these issues. It all changed after the spinal fluid drainage level was changed. They began to show themselves after the four day sleep. Was it a coincidence or would these issues have shown up anyway? I will never know. When it was all happening, it was one thing after another. It was only after a few years that I looked back, and wondered if all these things were connected. As far as the anger she was having, I believe it was the anti-seizure medication. It seemed to change her personality. I believe the phenobarbital dimmed the light in her spirit. And, that wouldn't change for weeks.
Wednesday, January 20, 2010
Tuesday, January 19, 2010
Anti seizure meds
After Marie's focal seizure in October 2000, the neurologist started her on anti-seizure medication. They first tried Tegretol. After a short usage the enzyme levels in her liver began to elevate. She was switched to Dilantin. Again, she had the same reaction. The numerologist wanted her to stay on an anti-seizure medication so seizures wouldn't become a problem. She had so many other things going on, seizures would have been very serious.
They put Marie on Phenobarbital. This medication seemed to work with no lever side effects. Instead, it appeared to make her dazed. It masked her progress. Was she getting better with her memory issues or was the medication keeping her confused and not very responsive. She became somewhat angry, but she didn't know why. In addition to the anti-seizure medication, she was also on steroids to control brain swelling. Don't forget, she had all those laxatives going into her at the same time.
All the trauma on the brain from surgery, the seizures, the medications, the changing spinal fluid drainage level, no wonder she took a four day sleep. No wonder she couldn't move her bowels. Her body seemed to be shutting down. Maybe it couldn't take anymore. Maybe it was protecting itself. After three weeks in the intensive care unit she was ready to move to a regular room. But, she was now facing intensive rehab. Walking, talking, thinking, interacting with others. That was all still ahead of her.
They put Marie on Phenobarbital. This medication seemed to work with no lever side effects. Instead, it appeared to make her dazed. It masked her progress. Was she getting better with her memory issues or was the medication keeping her confused and not very responsive. She became somewhat angry, but she didn't know why. In addition to the anti-seizure medication, she was also on steroids to control brain swelling. Don't forget, she had all those laxatives going into her at the same time.
All the trauma on the brain from surgery, the seizures, the medications, the changing spinal fluid drainage level, no wonder she took a four day sleep. No wonder she couldn't move her bowels. Her body seemed to be shutting down. Maybe it couldn't take anymore. Maybe it was protecting itself. After three weeks in the intensive care unit she was ready to move to a regular room. But, she was now facing intensive rehab. Walking, talking, thinking, interacting with others. That was all still ahead of her.
Monday, January 18, 2010
back to today
Marie is currently taking chemo treatments. Temozolomide capsules. Seven days on....seven days off. Over and over again. This is not generally used for the type of tumor she has. It's normally used for a very aggressive, fast growing, malignant tumor. Remember, Marie has a grade II benign tumor. Are we running out of options? I don't know. There always seems to be new treatments. Advancements, based on research and trials. Things for Marie have been getting better lately. Improved balance, less confusion, a better sense of what is going on. So, maybe it's working. My understanding is, in mid February, Marie will have another MRI, To see if this treatment is succeeding. I am very optimistic.
Sunday, January 17, 2010
the new problem
Marie had been in intensive care for a week and was nowhere ready to leave. She needed a lot of help, learning to regain her balance, using utensils to eat, and how to find the correct words to express herself. Memory and word searching became major challenges. the surgeon told me these problems are not unusual. If they aren't unusual, why didn't he tell us before about these possibilities. Remember, this was supposed to be surgery, in the hospital for 4 or 5 days, and then home to finish recovering. It's already been a week and and she was still in the intensive care unit, with all kinds of problems.
Marie already had a regimen of doctors. Our family doctor. The surgeon. A neurologist. And, A gastroenterologist. The health insurance we had at the time, dictated that our family doctor had to do a referral for every other doctor that she needed to see. She needed a referral for tests, appointments, medications. almost everything. I spent many hours communicating between different doctors and our family doctor to coordinate the referrals so insurance coverage was in tack. What if there was no care giver? Who would do it for the patient? My guess is that no one may have done it, and the patient or their family would end up with large, uncovered medical bills. That insurance company did cover everything they were supposed to, but it took intense scrutiny of all the bills. It took dozens and dozens of phone calls between the doctors offices, the hospital billing departments, the insurance companies. I will get into all that later.
By far, the biggest problem that all these doctors were concerned about was when she would move her bowels. That's right. No talk about memory, balance, the four day sleep. It was all about her bowels. She couldn't be moved from the intensive care until "IT" happened. The hospital ordered in a special bed that gently moved the patient from side to side. This would help limit the possibility of bed sores. they must have expected this to last a while. The nurse told me the bed was a rental, that had to be trucked in from another city. The cost, she said was $10,000 a day. I know that sounds crazy but when they say $10,000 a day they mean that's what will be billed. The real cost could be much, much lower. It depends whose paying the bill. You or the insurance company.
The gastro doctor would come each day, and load Marie up with laxatives. Then, he would come back the next day, expecting positive results. Nothing would happen, and the cycle would continue. More laxatives, more waiting, nothing happening. One day, two days, five days, 8 days. I lost count. The doctor would comment that he had never seen anything like this before. No one could hold this much laxative in their system. He asked me if she had this problem before. Oh sure, she always loads herself up with laxatives and then holds them in. He never did succeed. His intention, from what I could tell, was to keep giving her more until she exploded.
Let's get back to the nurse that woke Marie from her four day sleep. She was assigned to Marie whenever she was on duty. After what seemed like an eternity of laxatives and failures, this angel of a nurse took matters into her own hands. For the second time, I entered Marie's room in the early morning to find her sitting in a chair, with a slight smile on her face. the nurse was there and told me that things finally proceeded as planned. She help mother nature along by putting on a rubber glove, extending a finger that was lubricated with Vaseline. Get the picture. The nurse figured out that Marie was so constipated that a blockage existed. She cleared the blockage and let nature that it's course. To the nurse, it was another day on duty. To me, it was the act of someone who really cares about others. Hooray for nurses who care.
Marie already had a regimen of doctors. Our family doctor. The surgeon. A neurologist. And, A gastroenterologist. The health insurance we had at the time, dictated that our family doctor had to do a referral for every other doctor that she needed to see. She needed a referral for tests, appointments, medications. almost everything. I spent many hours communicating between different doctors and our family doctor to coordinate the referrals so insurance coverage was in tack. What if there was no care giver? Who would do it for the patient? My guess is that no one may have done it, and the patient or their family would end up with large, uncovered medical bills. That insurance company did cover everything they were supposed to, but it took intense scrutiny of all the bills. It took dozens and dozens of phone calls between the doctors offices, the hospital billing departments, the insurance companies. I will get into all that later.
By far, the biggest problem that all these doctors were concerned about was when she would move her bowels. That's right. No talk about memory, balance, the four day sleep. It was all about her bowels. She couldn't be moved from the intensive care until "IT" happened. The hospital ordered in a special bed that gently moved the patient from side to side. This would help limit the possibility of bed sores. they must have expected this to last a while. The nurse told me the bed was a rental, that had to be trucked in from another city. The cost, she said was $10,000 a day. I know that sounds crazy but when they say $10,000 a day they mean that's what will be billed. The real cost could be much, much lower. It depends whose paying the bill. You or the insurance company.
The gastro doctor would come each day, and load Marie up with laxatives. Then, he would come back the next day, expecting positive results. Nothing would happen, and the cycle would continue. More laxatives, more waiting, nothing happening. One day, two days, five days, 8 days. I lost count. The doctor would comment that he had never seen anything like this before. No one could hold this much laxative in their system. He asked me if she had this problem before. Oh sure, she always loads herself up with laxatives and then holds them in. He never did succeed. His intention, from what I could tell, was to keep giving her more until she exploded.
Let's get back to the nurse that woke Marie from her four day sleep. She was assigned to Marie whenever she was on duty. After what seemed like an eternity of laxatives and failures, this angel of a nurse took matters into her own hands. For the second time, I entered Marie's room in the early morning to find her sitting in a chair, with a slight smile on her face. the nurse was there and told me that things finally proceeded as planned. She help mother nature along by putting on a rubber glove, extending a finger that was lubricated with Vaseline. Get the picture. The nurse figured out that Marie was so constipated that a blockage existed. She cleared the blockage and let nature that it's course. To the nurse, it was another day on duty. To me, it was the act of someone who really cares about others. Hooray for nurses who care.
Saturday, January 16, 2010
coma?
Coma is a word that was never mentioned. Marie continued to lay unconscious, in the intensive care unit. Each day the nurse would say, Marie is still asleep. Who sleeps for days, never getting up to go to the bathroom. Never being thirsty or hungry. Why did no one ever say coma. That's the word that came to my mind.
I didn't know if the medical staff was hiding something, or if they just didn't know what was going on. It's a scary thought, that with all Marie had been through, no one knew what was going on. Surgery, seizures. Coma?
Another day come with more examining. They hooked Marie up to all kind of electrodes. There was a machine that was measuring brain waves. The test came back normal. No explanation. She was like sleeping beauty. The drainage bag was still connected and in a level position with her head. She was in this state four days. I continued to sleep in the waiting room, and go in and out of the intensive care unit to check on her. The morning of the fifth day, when I went into her room, Marie was awake and sitting in a chair. The nurse was busy changing the bed linens. She turned to me when I came in and said, surprise. I couldn't believe it. She explained to me that since nothing else seemed to be working, she decided to try something on her own. She had taken a cool wash cloth and kept stroking Marie's arms, legs and face. Eventually she came to.
I spoke to Marie and she responded with a small smile and a nod. There never was an explanation of what had caused the sleeping spell, or whatever it was. But it was over.
I didn't know if the medical staff was hiding something, or if they just didn't know what was going on. It's a scary thought, that with all Marie had been through, no one knew what was going on. Surgery, seizures. Coma?
Another day come with more examining. They hooked Marie up to all kind of electrodes. There was a machine that was measuring brain waves. The test came back normal. No explanation. She was like sleeping beauty. The drainage bag was still connected and in a level position with her head. She was in this state four days. I continued to sleep in the waiting room, and go in and out of the intensive care unit to check on her. The morning of the fifth day, when I went into her room, Marie was awake and sitting in a chair. The nurse was busy changing the bed linens. She turned to me when I came in and said, surprise. I couldn't believe it. She explained to me that since nothing else seemed to be working, she decided to try something on her own. She had taken a cool wash cloth and kept stroking Marie's arms, legs and face. Eventually she came to.
I spoke to Marie and she responded with a small smile and a nod. There never was an explanation of what had caused the sleeping spell, or whatever it was. But it was over.
Friday, January 15, 2010
the twitching leg
Late that evening, Marie's surgeon came to her room. He was checking that darn drainage bag. I told him that his partner had been there, and was concerned about the level of the drainage. I also told him about the twitching leg. As if on cue, the leg starting twitching again.
You have to remember, Marie still had not regained consciousness. The hospital had called at 2:00am. She went for an MRI. She had two different surgeons check her out. Her leg went into violent twitching twice. It was now late in the evening, and we still had no information as to what was going on.
The surgeon finally told me that Marie was experiencing focal siezures. He explained that they were seizures that could take place in one specific area. I believe, the change in the fluid drainage level, created these issues. They couldn't wake her up, and now she was having seizures as well. All we could do now, was wait to see, when or if, she would come to.
You have to remember, Marie still had not regained consciousness. The hospital had called at 2:00am. She went for an MRI. She had two different surgeons check her out. Her leg went into violent twitching twice. It was now late in the evening, and we still had no information as to what was going on.
The surgeon finally told me that Marie was experiencing focal siezures. He explained that they were seizures that could take place in one specific area. I believe, the change in the fluid drainage level, created these issues. They couldn't wake her up, and now she was having seizures as well. All we could do now, was wait to see, when or if, she would come to.
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