in the dark

I was put in touch with a social worker from the hospital that works with the neurological patients. After I complained to her about what I considered to be a lack of communication, is when I began receiving phone calls. They included a call from patient relations, the plastic surgeon, 3 different rehabilitation therapists, the oncologists office and the neurosurgeon. Each different area seemed to believe they were doing the right things and wanted to know if I needed any information or had any questions.

That was good follow up but none of them ever seemed to get the fact that they were communicating with each other but not to me. Marie was never able to relay any information about her visits with any of these people and none of them ever understand that. They all acknowledged that Marie was confused and had memory issues but none of them ever considered that Marie wasn't able to tell me about it. So I was in the dark.

a daily calendar

Talking with the team lead nurse I expressed my concern that I believed Marie needed to be receiving rehab now. You could have knocked me over with a feather when she told me Marie was getting rehab. Speech, occupational, and physical. Sometimes the therapist would come to Marie's room and sometimes Marie would be taken out of her room.

Let me explain how I felt at that time. I was very glad Marie was getting some help. Bit it hit me that even though Marie was on neurological floor, the medical staff didn't seem to get that Marie's memory was so bad that she wasn't able to tell me that she was getting rehabilitation. Marie had been telling me that she had been getting surgery. Even though I question the nursing staff about the supposed surgeries none of them ever made the connection that Marie was really describing her rehab.

I pleaded with the team lead nurse, that the nursing staff needed to keep me informed about the things that Marie was going through when I was at work. We talked about a daily calendar that the medicals could fill in when that saw Marie so that I would know what was happening each day.

would patient relations help

The person in Patient Relations was very business like. She wasn't apologetic or sympathetic. She just gathered my concerns and told me the names of the team lead nurse and the floor manager. She asked me if I would like them to contact me and I said yes. I was naive. I thought that Patient Relations would help me work through issues, but it wasn't like that at all. This was going to have to be me versus a hospital and its staff.

If I remember correctly I talked with the team lead nurse first. I explained my concern with what I considered a lack of communication. I felt the team lead nurse was somewhat defensive of her staff. Not like a bear defending her cubs, more like a parent listening to the teachers complaints.

what's going on

As Marie gets more "with it", I begin to question why she is not getting any rehab while in the hospital. When I would arrive after work to visit Marie, she would tell me that she had more surgery that day. Of course I would check with the nurse to see if any doctors performed surgery? That answer was always no. But talking to the nursing staff was too much like pulling teeth. I do not think they were hiding anything from me, although at that time I didn't know what to think.

I was growing more concerned about Marie's confusion. How would she be able to function if she had these delusions about daily surgery. I believed they needed to start rehab right away, so I called Patient Relations to help me find out what was going on.

10/03/2009

There has been no sign of spinal fluid leakage which is a good thing. Finally a good thing. A possible CT scan is planned for that day to check the brain status. Marie is having a sleepy morning so I take the time to talk to the day nurse. He explains to me his understanding of the social worker process and after hospital care that Marie may need. I am told a social worker would be contacting me to explain what Marie would qualify for.

The medicals are talking about Marie leaving the hospital and going some sort of rehab center for a few weeks until she is able to gain some strength. I'm not sure that they have cleared up the infection though. And that's why she came to the hospital in the first place.

10/02/2009

It's now October 2, 2009. Marie has been in the hospital for three weeks. It's also three days after the plastic surgeon did her repair. There is a drainage tube removed from Marie's head and now the process is to wait and see if there is anymore spinal fluid leakage.

we're just beginning

I'm glad I have that off my shoulders. Unfortunately lack of professionalism was just the start and I haven't hardly even touched on an insurance case manager or hospital social workers. We will get into all of that but tonight I think I've said enough.

time to be ashamed

This was a case that the cure turned out to be as bad as the disease. All the radiation created a condition where the skull and scalp were not healing from the latest surgery. It had been a month since that surgery and a plastic surgeon was needed to repair a hole. None of the medicals believed that a leak was occurring. That allowed a staff infection to enter my wife's spinal fluid which almost killed her. I had to make a resuscitation "call" and then a week or two later my daughter witnessed her mother going through a code blue. To cap it all, a nurse at the code blue, verbalized her excitement for code blues, because that's when the fun starts.

I can tell you that my daughter didn't have any "fun" at the code blue and I know that I didn't have any "fun" watching my wife suffer. I was disappointed with the doctors and the hospital nursing staff on the neurological floor. There was a lack of professionalism and decorum. They should be embarrassed by their actions and ashamed of their treatment to my wife as a patient, and our family as caregivers.

probable cause was radiation

Okay the last few posts my daughter talked about the code blue day. Now I want to get back to the spot where Marie was waiting for enough air to come back out of her head so plastic surgery could be done to fix the leaking hole in her head. CT scans continued to show a decrease in the air so the plastic surgery was finally scheduled. Marie went into surgery which lasted about an hour or two.

When the plastic surgeon came out to see me, she explained that she found a hole in Marie's skull that was created by the omayan reservoir. When the reservoir was removed the hole that was left behind never healed. The probable cause was the previous treatments that Marie had to remove brain tumors.

time for a visit

Those last five posting was from our daughter who wanted to tell it in her own words. The "day" Marie had a code blue.

She had been in the hospital just a couple of weeks at this point. Admitted with a spinal fluid infection. Us having to "make the call" for resuscitation on her first night. A "discovery" of a spinal fluid leak. A spinal tap, a code blue. Surgery to correct the fluid leak that didn't work. Facing plastic surgery. All the time still trying to clear up the spinal fluid infection.

And then, the relatives decided it was time for a visit.

isn't this fun?????

I had to wait an hour before they seemed to remember I was in the room. All I got for an answer was, “We don’t know, that was weird” and “the doctor is on her way”. They took my mom for a CT scan to see if the brain was okay. That’s when I called my Dad to inform him of the day’s excitement. He came soon after to make sure what happened and see the doctor. If you miss the doctor’s visit, the information shan't be repeated.


I was talked to by the on-call doctor who told me it could have been a response from her growing tumors. Even late on, the main doctor gave a vague, “it could have been anything” response. Nice. Only 7 years and I could get paid to tell families that I have no clue what that was but whatever more meds will fix it!


The doctors did help stabilize her but were never willing to call the episode what it was a seizure. I never saw her have one but my Dad described them and that was it.


This was one of the worst days of my life. And there is a kicker; every story needs a kicker, right? When the blue button alarm was called off and the nurses left the room, just outside the door, one nurse remarked to another that she loved when thing’s got exciting and was disappointed that the fun was over.

on-the-fly

The mythical blue button instantly calls dozens of people: nurses, doctors and students and even the priest. Her room filled up with two minutes, not everyone could fit. I counted, there were 30 people. So many people were in the room, I was pressed up against the window.


The nurses got her back into bed to hook her back up to the machines. Then we learned her vitals were dropping. They started consulting, called her main doctor, and gave her medicine, all kinds of quick, on-the-fly procedures they trained for. I was very immediately distracted by the priest; I think that was on purpose. He talked to me so I couldn’t tell what was happening, but they were still poking and prodding. I was surprised they let me stay in her room while they did this.

the blue button

It gets stranger. The nurse called a back-up in to help get her back in bed. They asked her to sit down in the shower-seat. She did, but kept trying to get up. They kept pushing her down and asking her to listen to them. This woman, my mother, could take out two string-bean nurses while being impaired and weak in the hospital. At this point, I started freaking out. What was going on? She was fine two minutes ago.


Now they brought in a third nurse, a guy. They asked mom to lie on the floor. They were going to pick her up on a sheet and put her back in bed. They called in one or two more people. Her presence of mind quickly decreased. She was definitely having some kind of an attack. This is when the nurse pushed the blue button.

the sh - - hit the fan

It was maybe 10 minutes to 2 and I was getting ready to leave for the day. My Dad would arrive at 5:30 and I wanted to finish my homework. This is when the shit hit the fan. My Mom wanted to go to the bathroom. The nurses had to be told because she was hooked up to bed alarms (the stupidest thing in the hospital because they ignore them). The nurse come in, helped her to the bathroom and closed the door over, but not shut. I waited so I could say goodbye. I waited a good 10 or 15 minutes. The nurse wandered back in and went to check on her. When she opened the door, my Mom was over by the sink, just looking around.


She wasn’t responsive. The nurse thought she needed help at first. Oh no, things got much stranger. She had no idea where she was or what to do. Then she wouldn’t even speak. I was watching all this from across the room wondering what was happening. I could see as she shuffled around the sink, her eyes dilated, to the largest possible. I could see her pupils from out the bathroom, across the room and past her bed. The other side of the room!

strange but true

This next section is considered strange but true. Since I wasn't there but our daughter was, she will tell the tale.

I remember I was taking my Astronomy class so it must have been between September and December of last year. I think it was mid-September. I was visiting my mom as many days as I could in the hospital. This day, I remember, was a Thursday because that’s my day off. I went to the hospital at 11am. I went to the 5^th floor, all the way to the end of the hallway and saw Mom spaced out in her bed like normal. Well normal for this 30-day period. I got her to agree after much delay to some lunch. You could order a patient up lunch like room service. When she got her lunch, I went to eat in the cafeteria.


After the meal, I stopped at the computer area for visitors. I wanted to get some homework done. Unfortunately, these computers didn’t have flash player, so I couldn’t do much work. So, I wound my way back up to my Mom’s floor.
She looked confused and asked about lunch. Explaining that she already ate had become common occurrence. She seemed confused today. When she first got to the hospital she was out of it, the next week she was better, then she got moved to a new floor and seemed to get more confused.

I won't pay you

It took a few days and Marie started to come out of it. The surgeon ordered another CT scan which showed the amount of air in Marie's head was cut in half. He had a new plan now. Continue to monitor the air reduction and when it's low enough, a plastic surgeon would go in, find the hole, and seal it.

When the plastic surgeon came to visit and do a preliminary examine she was totally shocked when I asked her if she took our insurance. Nobody ever asked me that before. So I told her, how about if you do the work, and then you tell me that you don't take my insurance, I won't pay you. The plastic surgeon had her office take care of the insurance the next day.  

one thing at a time

All we can do now is wait and see. No one really knows if the spinal fluid leak in Marie's head is sealed. Nothing is coming out right now because the head has so much air in it. The hope is that the air will escape the same way it got in, but that would mean the hole in Marie's head would still be there. But one thing at a time. Wait a few days and do another CT scan. If it does Marie should come out of the deep sleep.

the same as eight years earlier

The fluid drains from Marie's spine and the nurses monitor the output. But Marie's condition worsens. She goes into a very deep sleep. I described it as a semi comatose state but I don't really know if that's what it is. All I know is the nurses can't wake her up. This is virtually the same as eight years earlier when Marie couldn't wake up after the doctors adjusted the height of the spinal fluid draining from her head after her first brain surgery.

The surgeon decides to have a CT scan done to find out what's going on. The results are shocking. Marie lost so much spinal fluid in her head that air rushed in.This has become a dangerous situation. The surgeon pulls the lumbar puncture out so no more spinal fluid is released. They can't afford to have any  more air enter the head.  

back to today 8/12/10

Marie had chemo treatments yesterday and today. Everything went smooth. What stands out the most, is that all the chairs were full. And they have quite a few. Sometimes there is hardly anyone getting chemo. I haven't been able to figure out why some days are busy and some are not.

If your car engine sprung a leak

The important part of draining off spinal fluid for Marie was not to over drain . I heard the doctor give the orders to one of the nurses. He didn't want to exceed a specific amount of fluid per hour. The nurses were supposed to monitor that output. Remember this procedure was administered because of the leak in Maries head.

At this point I had convinced myself that the area of the leak was a good candidate as the location that the infection may have entered Maries spinal fluid. As painful as the puncture was, the leak needed to stop and the hole had to be plugged. But messing around with the level of spinal fluid worried me.

Here is the way I think back on it now. If your car engine sprung a leak, and gasoline was coming out of the  top of the engine, that would be very dangerous. So you puncture the fuel line in order to let the gas out there. But you don't want the gas to come out to fast because your engine would stall. You would have to let only enough gas out, so enough would still get to the engine to keep your car running, but not enough to reach the top of the engine. Did you get all that.?

hoping for better results

The surgeon had Marie turn on her side so that he could puncture her lumbar. The goal was to get into the spine and drain off some of the spinal fluid. when he started he told Marie that she was going to feel some pressure. Never ever have I seen a person scream in such pain. Not "ow" that hurts, but a blood curdling scream. She was in pain that I can't describe. I wanted to help her but I couldn't. When each of my children were born I was there. This pain appeared much worse.

Finally it was done. The puncture was successful and fluid was running through a tube from Maries spine to a bag hanging on an IV pole. All I could think of was after Maries first surgery, when this same surgeon changed the height of the spinal fluid drainage tube that was coming out of Maries head. That first time she ended up having seizures. I hoped for better results this time. 

a two pronged approached

Since the surgery to repair the spinal fluid leak didn't work, the surgeon decided take a two pronged approached. First he was going to re-stitch the area while applying some adhesive to the wound. That was the easy part. He was also going to do a lumbar puncture in order to drain off some of the spinal fluid. By lowering the amount of spinal fluid he was hoping to keep the scar dry and help it to heal better. By the way, a lumbar puncture is a spinal tap.  

The lumbar puncture is a painful, painful procedure. There is just no way to prepare for it.

spinal fluid leak came back

It only took two days before the spinal fluid leak came back. The doctors seemed optimistic that they could seal the leak. Tighter stitches, a little glue. If all else failed a plastic surgeon could be called in. I never had any doubts that they could fix it. What keep going through my mind was how did Marie get the infection in her spinal fluid. Was this how the infection got in? My goal became to catch up with the infectious disease doctor and ask him.

nurses put in for a room sitter

After Marie's surgery to repair the spinal fluid leak, she had a big bandage on her head. She was kept slightly elevated to keep the area dry of spinal fluid, so that the stitches had the best chance to heal. Marie's confusion and poor memory were still the same.

The hospital didn't want Marie to get out of bed on her own, and risk getting hurt, so they set an alarm on her bed. If she tried to get off the bed the an alarm would sound and the nurse would come to investigate.
As many times as the nurses would tell Marie to press the button if she need to get up, and as many times as Marie would say okay, she would never remember to call for the nurse. She would never remember that there was any conversation at all.

That was a big frustration for me, and one of the biggest differences that I found between the oncology floor and the neurological floor. Marie's poor memory wasn't her fault. On the oncology floor she was treated with respect and consideration for what she was going through. On the neurological floor she was just another patient with a brain problem. At times Marie was so fast that she could get out of bed before the nurse could react to the bed alarm. As long as she wasn't in danger she wasn't a problem. So the nurses put in for a room sitter. Their responsibility was to keep Marie in bed and call for help if she got up.

it didn't happen on my shift

It had been less than a week that Marie was in the hospital, but it had already been a lifetime. She had been diagnosed with an infection in her spinal fluid, which wasn't clearing up. Her vitals were so inconsistent the first night we didn't think she was going to make it. She had been transferred from a chemotherapy floor to a neurological one. A spinal fluid leak was discovered and surgical repair was performed.

Marie had four doctors by this time. The oncologist that admitted her to the hospital, an infectious disease doctor, a surgeon and an internist. She also had nurses, technicians and other helpers. Even with all these medicals involved with Marie I felt that I had the least amount of communication than any time in her entire brain tumor saga. It was difficult to see any of the doctors because I had to work during the day. The nurses did not offer much information at all. And if you asked them a question it seemed like the answer would be things like, I don't know, it didn't happen on my shift, or I wasn't here yesterday and I won't be here tomorrow.

surgery

On September 16, 2009 Marie had surgery to re close her scar from the brain surgery that happened in August. That's where the leak of the was coming from. After Marie's nurses discovered the leak, Maries surgeon in Omaha, decided to re-suture the incision. Obviously that incision did not heal properly. I was glad that Marie was getting help ,but it still didn't seem to make sense to me. Spinal fluid must be coming from inside the skull. At least that's was I was thinking. If the medicals re-sewed the scalp, wouldn't the fluid still be coming out of the skull?   

guess what

It was only a day or two on the neurological floor when the nursing staff saw a large amount of fluid on Marie's pillow. They suspected a spinal fluid leak. The nurses reported their findings to the doctor. I'm not sure if they told Maries surgeon or her oncologist, but both of them were well aware of the suspected leak, since neither could fine the leak a week earlier.

When the nurse informed me of their discovery I was relieved that a medical actually found the occurrence. I was told the surgeon was coming in to inspect Maries' scalp for a possible place that fluid could be coming from.

Sweating, yeah right.

helping Marie

It was obvious that Marie did not know where she was or what the date was. I starting writing the day and date on the blackboard each day to help Marie. I made sure that she saw my cell phone number on the board and told her to call me anytime while I was at work. Unfortunately, Marie's short term memory was so bad  she didn't remember to look at the blackboard. When she did none of it made sense to her.

Things would happen such as I would get to the hospital after work and Marie would tell me she was starved because she didn't have any diner. When I would check with the nurse they would tell me things like she just finished dinner. Or she said she didn't want any. Marie's memory was so bad she couldn't remember if she had eaten or not. I asked the nurses to help me by writing on the blackboard simple things like Marie had diner or a doctor came to visit.

I could never get the nurses to comply. I don't think they intended to be difficult. But the staff changed so often.

adapting to the new floor

I found it difficult adapting to the new floor. The nurses had two 12 hour shifts. They went from 7:00-7:00. I would work during he day so I got to the hospital about 6:00 each night. After Marie would fall asleep for the night I would go home to take care of the laundry, bill, and other chores. On the days I was off from work I would spent the entire day at the hospital.

Everyday that I worked, I would call the day nurse and ask her if there was any report from during the night. I also made sure she had my cell phone number, and made sure the nurse knew she could call me at anytime, for anything. Before I went home each evening I made sure the night nurse also knew to call me anytime for anything. I also put my name and cell phone number on the blackboard in Maries' room, and made sure every nurse knew where it was.

I never received a call from any of the nurses.

change floors

After a couple of days on the chemotherapy floor, Marie was moved to the neurological floor. It's virtually a brand new floor with an outstanding waiting area for visitors. But you know what they say. You can't tell a book by it's cover.

Marie has a private room with the latest technology. What's noticeable right away is how young the nursing staff is. Youth isn't the issue, it was the experience. On the chemotherapy floor the nursing staff appeared to be a mix of newer and more experienced nurses who were quite comforting to the patient and family members. But on the neurological floor things were more by the book. Following procedure was the important thing. I'm sure medical needs were given, but emotional needs didn't seem to be considered. Fortunately Marie didn't notice because of her confusion, but I was uncomfortable from the beginning. It was like being in a different hospital. 

clear the infection

The next few days were somewhat uneventful. Marie was on the chemotherapy floor but she was no longer receiving chemo. She was getting antibiotics for the infection and she was started on steroids. Marie was in a state of confusion not knowing where she was, the city or the year. None of that was important at then, just needed to clear up the spinal fluid infection.