Sunday, April 6

Old and new patterns

Jackie had a very restless night last night.  He probably slept no more than an hour.  We can tell he just is not feeling well.

We started the process of beginning his nutrition once again.  We had very slowly worked him up to about 2/3 of his new lower goal, and unfortunately he got sick early this morning.  The solution to this old pattern of behavior is now complicated since many new medicines have been introduced to his body.  We are told that even nutritional decisions are driven by weighing the risk factors.  Timing of when to make the decision to begin IV nutrition vs peg or feeding tube nutrition needs to be right.

Late last night we gave Jackie meds to help with his system.  Still no success.  An x-ray was taken of his abdomen this afternoon to ensure everything looked ok.  Finally, he had some relief. We are hoping this will make him feel a little bit better.

As I mentioned in earlier posts, getting new IVs started and drawing blood has become a daily struggle.  We are looking at putting in a PIC line tomorrow.  This one IV inserted underneath his skin can service up to three IV lines and can stay in for a while.  We almost do not have a choice but to do this.

We have seen very small glimpses of improved neuro function.  In an effort to test if Jackie’s eyes can focus and move correctly, the doc held up a $10.00 bill.  Jackie tracked the bill with his eyes all the way back to the docs wallet.  We thought this was an appropriate object to use for Jackie.  In fact, when we were with the nurse talking about it, we were able to see a slight smile/laugh from Jackie.  PTL

The swelling at the infection site has not changed. The docs are keeping  a watchful eye on this to make sure the course of treatment is correct.  The infection must be painful for Jackie as we have seen him stop himself before opening his mouth wide enough to finish a yawn.

We are continuing our request to hold off on visits for now.  We even asked our families to hold tight today.  It is so hard for us to do this as we appreciate the support you have given us more than you will know.  We just think Jackie needs some downtime.  Jim and I are taking turns taking cat naps in his room.  We are both sleeping in is room at this point as we would like to be together until Jackie’s condition becomes more stable.  We also both want to be here when the docs stop in.

As I mentioned yesterday, TBI adds an extra layer of complexity to patient treatment as every case is unique.  We are on a dedicated ICU floor specifically for neurology patients.  Several teams are working together to implement the best course of treatment for Jackie.  Our best hope is that the docs can steer us down the correct path as old and new patterns create new crossroads to care.