Sunday, November 21, 2010

99% vs 1%

I'm not sure if we are just getting to a tougher phase of this all, or if it is just me, but I am having a hard time gathering my thoughts today so bare with me!  (And forgive all of the errors of the previous post!  It was late.)

Last night Lara slept as well as one can with nurses coming in so often.  Time for meds, time to change position (she is not able to roll over or push herself to her back), time to empty the catheter, time for an ekg... so every so often she is woken up.  Not to mention two different sessions of her waking up and saying, "Lacy?"  "Yeah, I'm right here Lara."  "Okay"  long pause..."I wanna go home."  Of course I tell her some reassuring words.  She had a few cute moments too.  During the 1:30 am change she wanted to watch the news.  I asked her if she was sure because it was 1:30 in the morning (trying to encourage more of the night/day activities that can get confused being in the hospital for three weeks.)  I turned it on and it was all of the college football updates.  Once the nurses were finished they told her they were leaving.  She said "I just wanna hangout with my sister, we were playing football."  I had to smile.

This morning was an "easy" version of what is to come.  Only one session of OT and this afternoon was only one session of PT.  She will be having 3 hours a day of just therapy.  Split up into about 45 minutes each between three different focuses.  Speech, occupational, and physical therapy. 

It is hard to describe to people who haven't got to see her the reality of her true abilities.  I try my best, and I try to be honest and detailed without too much gory detail, or soppy sad detail.  Some people have wondered why Lara even needs one of us to be with her 24/7 or if that is more for us.  "Us" meaning her fiance, parents, and siblings.  From day one to today absolutely.  There were times she was tearing out her own tubes...not great to pull out your drain in your head, or your catheter.  There were times she was scared and needed some comfort for the moment because from moment to moment her knowledge changes, not just day to day.  There were times that one of us could get her to do something that was in the moment vital to healing, that a nurse couldn't get her to do (ie eat, breathing treatments, or just even cooperating with the nurse).  I'm not saying that we don't want to be there.  We all want to be there all day if we could.  There is so much information each day and it changes so quickly.  Just even trying to keep the 6 of us current and up to date on the latest information is difficult.

Today Lara had two moments that in those moments I think she was starting to realize what her new reality might be.  Do I think she gets that right now.  No.  The last neuro check I saw her do she told her doctor she was in Arby's.  Perfect example of literally one second she is regular Lara, and the next second, she doesn't really get it.  Today she was working with OT trying to wash up (which is difficult to do with only one hand, you have no balance of sitting, trying to hold your head up, and you have no left peripheral vision and it hurts to turn your head because of the big ole tube in the back of your head running down your neck).  Her therapist was asking if she had gone to school and she said yes she was in school for dental assisting.  I tried to give Lara some gentle encouragement without giving her answers or saying it for her (another thing for her AND us to be working on down here in rehab, we don't get to go behind her making better choices for her, answering for her, explaining for her), that she had graduated.  "Well, Lara are you still in school," I asked.  You could see her thinking.  "You aren't in school any more, do you remember why?"  "No."  "Try to remember, think back to what you do remember and work your way through it."  This was a few minutes.  Her voice started to quiver, and the look of fear...almost starting to cry, "I can't remember."  "You graduated.  Remember?"  "Oh yeah," her voice still trembling, but with relief, "I graduated."  Another moment like that later in her bed about wanting to go home and be with her family.  That quivering voice when she IS being the regular Lara just tears your heart out.  In those moments, I had a glimpse of her maybe understanding in that second, what her NEW reality may be.

She did have some visitors come in who she has been asking for and hallucinating about for some time.  Her little nieces.  When her little three year old niece came around that bed to hold her hand I came up close and saw the tear roll down.  Lara was smiling so big (well, one sided, today her left side of her checks and lips were not participating) it was a happy tear.  It has been exactly three weeks since she has seen them.  It felt good, for everybody.

Lara is now in rehab for sure another nine days.  Depending on so many different factors, it could be four weeks in this rehab facility.  Many of the staff the last two days have asked about living arrangements after her being discharged.  So many variables being involved, not knowing when, what will her capabilities be, what will she still need help with, will she still have room for improvement, how rapidly is she making improvement, can she go to one of our homes, they mentioned maybe a group home, for how long....I could keep going, but that would just bore you and pop my ribs out.  After seeing her two days in a row with what they are doing with her in OT, our reality is changing.  Obviously this is a life changing event.  For all of us.  These next few weeks are filled with so many "IF's" that it is hard to not let your mind run with all different directions.  Especially when the nurses and doctors have told us a few times in the past two days to get some rest.  You need to be rested and ready for when she is discharged.  I think we are getting out of the "survival" mode and into...well I'm not sure what mode exactly, but easy is not apart of it at all.  In fact, survival mode may be "easier".  My vote is to wait and see.  No since in worrying about something that may not even be an issue right?  (99% of my brain keeps telling that 1% that.)  Pray about these decisions we will be having to make for Lara and with Lara these up coming weeks.  There will be some tough ones.

Ending on a much more fun note:
Lara during PT this afternoon moved  herself a bit in a wheel chair.  She used her right foot, and right hand and moved down the hall about 16 feet or so.  Huge.


  1. As a family you will do what you need to do. Having been a 24 hr caregiver for my husband, yes you do need rest. God will give all of you and Lara whatever is needed. Faith moves mountains and prayer is powerful. You all are in our prayers and here if needed.

  2. Wow, the movement in the wheelchair is tremendous. What effort and success! And yes, as Bonnie said, I can tell you from caregiving for my mother even in a nursing home and full time for my husband at home, get rest. The drain emotionally and physically is hard to keep up with but she will need you all. Prayers are the simple part for us who want to do something to help......