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.