Saturday, April 12

Day by day – Mile by mile…

The first half of Jackie’s night was rough.  We believe he had a painful headache due to the lumbar drain and the amount of spinal fluid initially drained.  The second half of the night got a little better as we gave him IV meds for pain.

Jackie’s neurosurgeon stopped by this morning and reviewed the day by day plan with us.  Today the nursing staff will drain a small amount of spinal fluid every hour.  Jackie will be accessed each hour to ensure he is tolerating this drainage amount.  His spinal fluid will also be tested daily.  From there we will go day by day gauging next steps on Jackie’s condition and neuro function.   He will remain in the ICU for now.

Lindsay and Florent just left.  It was so great to see them and give my Lindsay a huge hug.  They will be visiting again next weekend.  Saying goodbye was not as hard knowing we will see them again soon.  Jackie was so happy to see them.  He laughed at a story that Florent told and loved caressing Lindsay’s hand all day.  They both have a lot going on in their lives and the dedication, caring and love they have shown toward Jackie has been incredible.

The marathon continues.  The course is challenging and long.  Since Jackie is still not speaking, I can only imagine all the thoughts and feelings that are going through his brain.  Jim and I are starting to see behaviors that are tied to feelings.  Very early this morning Jackie stared into my eyes and I could tell he was hurting just by the intensity in his gaze.  I know it may take a while and is many miles down the road, but how I am looking forward to a day filled with more smiles and joy than pain and frustration.