The not fun part of the roller coaster ride

Today was kind of a hard day.  That part of the roller coaster you don't like (you pick that part the up on the ride or the down which ever part you hate).  Lara had gotten so weak that she could hardly hold her head up.  The weakest she has been since she's been here.

For breakfast she sat and ate not even a quarter of her food.  Dr. Wang came in and explained to her that she is now at the phase of care where she has to do all the work.  Not having any IV's she needs to be eating more and sometimes getting her to do that can be a challenge.  Dr. Wang was not too happy about how weak she was and the fact that she couldn't hold her own head up.  She hasn't gotten much movement in since the shunt surgery either.  Before that surgery on her left side there was some movement.  Remember she even shuffled her feet with a walker and the help of three other people.

After a good rest she sat in a wheel chair with no head rest and struggled holding her head up.  We had to keep reminding her because she would just let it flop back.  She ate pretty good at lunch.  While in the wheel chair OT came.  She did some exercises then she helped with her right hand and foot to get herself over to a sink in her room to brush teeth and wash her face.  All of this sounds so simple, but let me tell you it was a process.  It took a little over a half hour just to do that, the wheeling over, brushing and washing.  The therapist definitely made her work for it.  Her left side is so weak.  She doesn't like to turn her head to the left.  She can't see very well out of her left eye.  Since Tuesday when the shunt was put in she has no use of her left side, leg, foot, arm, or hand.

She is getting pretty frustrated about not being able to get up on her own when she wants to.  Just wanting to take a shower and go the bathroom when she wants and needs.  (And let's be honest don't we all?)

She didn't eat much at dinner.  Her stomach had been hurting pretty bad and progressively getting worse through out the night.  Finally they ordered an x-ray and a bladder ultra sound.  As the nurse was doing her  neuro check and she wasn't passing.  Before this test (but since the shunt surgery) Lara has had sensation on her left side.  She could still feel us touching her.  This time no.  So much so that at one point I had taken a butter knife to the bottom of her foot (in a loving sister gonna hurt you because I love you sorta way) and still nothing.  Mom and I had noticed her foot was a little swollen (just assumed from not much movement and circulation) so we did some of her passive stretches and some exercises.  No feeling in her hand either.  Lisa did do a little pinch test on her inner thigh.  She felt that and I made sure to tell her that it was Lisa that did that.

The nurse wasn't feeling great about her responses so down she goes for a ct scan.  This time (well every time but REALLY this time) was kind of nerve racking.  She has come back now.  She was done with her catheter (for the second time) but again, her bladder doesn't seem to want to release.  Getting kinda lazy.  So maybe that was some of her pain her half liter of urine that she can't seem to release on her own.  We will know more when the x-ray comes back.

She's been back in her room about an hour and she is sawing some logs.  The nurses said if it was an emergency we would know sooner or if not we may not know the results of the ct scan and the x-ray until tomorrow.  Wish I had more information for you all.  But now you have to wait.  (Yeah, I don't like waiting either.)