Wednesday, April 16

Getting back to baby steps…

Jackie’s night last night was a little more restless than normal.  He still was able to get some sleep which was good as today was a busy but good day.

This morning the docs stopped by early as usual and examined Jackie.  It looks like we may be in the hospital until mid next week or later.  Tentatively they plan to stop draining spinal  fluid on Friday.  Then we will wait to see how Jackie’s body responds on its own to the extra fluid in his brain.   After a certain wait period Jackie may need to go back in the OR for a shunt.  We will cross that bridge when we get there.  Day by day….

To our surprise and excitement, the ST team stopped by.  Jackie ate a couple ice cubes and we also worked on verbal commands.  Jackie is not responding well for some of the specialty teams and docs.  We are not sure if he is still in a little fog from the fluid retention or if he is just frustrated and opts not to respond.  Either way he still responds to us.  We would say he is about 75-80% of where his neuro function was at Geisinger.  The ST team asked that Jim and I continue to work with Jackie, so tonight we had him move his tongue out to lick a lollipop.  Lenora showed us how to do this at Geisinger.  We were able to get Jackie to lick his lips and rub the front part of his tongue against the lollipop.  I know this doesn’t sound like a big deal, but it truly is!

The PT team also worked with Jackie today.  He did leg squats while laying down on the gravity table and then sat in the wheelchair.  He was out of bed for a little over 3 hours.  Another positive part of the day.  He was very tired so we got him back in bed.

Our nurse today was persistent and wanted to get a thumbs up from Jackie.  By the end of her shift he had given her three and the last one included a smile.

Another notable baby step is in relation to Jackie’s nutrition.  We are now up to goal!  PTL

Your positive thoughts and prayers are being felt in Philly.  Thank you for continuing to send them Jackie’s way as we head into a couple days of uncertainty.