Multiple Seizures

It turned out to be a terrible night and I am very upset.  I tried to write about it last night but I couldn’t organize my thoughts.

Satomi has been having trouble drinking enough water.  More water means more potty trips so she just doesn’t drink as much.  She takes many strong drugs so adequate fluids are essential.  Likely due to the dehydration, Satomi has been very constipated for over 2 days.  Maybe that’s too much information for some but it’s important to this story.  I’ve started her on oral laxatives that afternoon.  Usually the problem resolves itself in 4 to 6 hours but her dehydration made it ineffective. 

When I realized that she didn’t have enough water for the day, I pushed her on fluids.  A couple of bottles later her blood pressure was nearly normal.  Unfortunately, the large influx of fluids caused her to get a bad headache.  She is already on pain killers so a headache can be dangerous.  I adjusted her medication and it seemed to work OK.  It’s much easier on her system if she drinks steadily throughout the day.

A few hours later, I walked Satomi over to the toilet to see if the laxatives and fluids had worked.  There was no success after 15 minutes of effort so she took a “more effective” laxative.  She sat there for another 20 minutes and was successful.  That was good news.  Now she had to get back to bed some 20 feet away.  I was concerned about her back or strength but she looked and sounded good.  Then she stood up.

A few seconds after standing up and adjusting herself, I saw her toes contort and knees bend.  I grabbed her arms.  Her hips rotated a bit and she started to slouch.  I grabbed her around her torso.  She yelled, “My knee!  My knee!”  I shifted my position, changed my grip, and glanced down at her legs.  A second later, she was collapsing.  I grabbed her on the way down and she yelled about her knee again.  I didn’t want to hurt her so I guided her down to the carpet just outside the toilet area.  She had a whole body seizure in my arms there on the floor.

I held her and supported her head.  She was breathing but irregularly just like all the other times.  A minute later she came to but a bit groggy.  It took several minutes for her to realize where she was.

I tried to help her up and she fought me each time.  She kept talking about her knee.  She had a crazy look on her face so I didn’t believe that she was completely conscious.  I put a belt around her chest to help my grip.  She had to get off the floor.  Remember that brian stem tumors are very positional so I was afraid what would happen on the floor.  With my help, she started to stand up.  About half way up she had another seizure.  I guided her down and held her again.

It was identical to the first time.  I started to get upset.  Seizure could mean instant death so I just had to get her onto that bed.  In the context, her knee pain just didn’t matter.   I was determined to get her in bed.  She regained consciousness a minute later.

I turned her over, adjusted my grip, picked her up and carried her to the bed.  She yelled about the pain the entire time.  I slowly put her down on the bed and she seized for the third time.  I was definitely upset.  I got her back to a normal position and supported her head.  I held her and she came back.  She was talking after a few minutes.  20 minutes later she didn’t remember what happened.  The look on my face was very telling so she knew something had happened.  I asked her about her knee.  Her answer was something like “what about it?”

We talked for a while about what happened and she reinforced what I had already been thinking:  “When I’m having a seizure, I’m unconscious.  I say whatever comes to mind which may have nothing to do with what’s going on.  You can’t listen to what I say.  You just need to do what you know is right.”

The truth is that I hesitated-I changed my grip to look down at her damn knees.  She should never have reached the floor.  After reaching the floor, I was so torn about her pain, I lost site of her living.  My resolve wavered and our Satomi could have died last night. 

That will never ever happen again.