Day 9: March 22, 2012

Hi everyone!

Whew!  Other than the first day with the huge shock, today has probably been the toughest day to date.        Just transition issues.  We are Scott's advocates.  He is unable to advocate for himself.  We want the best for him.  No excuses.  We were so excited to progress to the next level, knowing that meant he was improving and we love seeing new growth each day.  We know that we have a mercurial course ahead of us.  We have been forewarned many times to expect ups and downs from day to day.  We know that as he improves, he will receive less attentive care.  His nurses will be responsible for more people and we will need to more involved in setting expectations and details of his plan of care.  The realities were a bit starker than we anticipated, though.  There is a bigger difference in the level of professionalism, communication, and POC (plan of care) awareness than we anticipated.  In ICU, they were always one step ahead of our concerns.  We felt they were on top of things.  They communicated their plans and expectations.  They prepared us for possibilities to come.  Each person instilled confidence in us.  Here, we feel that we have to be extra watchful and are going to need to be the ones assuring they don't miss something.  We do not feel like we can leave him unattended for now.  In addition, we are not confident with their infection control procedures to date and have had to devise a plan to address the issues we felt were lacking.  The last thing he needs is an infection.  And... communication-wise...when they come in, they rush and do what they need to do, but fail to talk to Scottie while they are doing it.  In ICU, we noticed that he really calmed down and stopped fighting them when they talked to him as if he were awake.  We know he can hear us.  He can follow commands.  We can imagine he is confused.  It seems like such a simple thing to do to be able to give him some peace of mind.  It seems like the professional thing to be aware of and do.  They have responded promptly and appropriately to our concerns, but it feels disheartening.  It gives us extra reason to hope he passes through this stage quickly.  We do have confidence in the physical therapist and the wound gal, at least.  We are anxious for him to get to Barrows anyway.  These issues just add fuel to that desire.

There is no progress today to report.  We were warned that he would be worn out from the transition and likely backtrack for a day or two.  He slept most of the day today and only occasionally followed commands.  He did open his eyes a few times, but no indication of recognition.  He didn't participate much with physical therapy/occupational therapy today.  They are co-treating him for now, since he requires two people to help move him.  The PT re-iterated that he would likely decline for a day or two due to fatigue/exhaustion from the move.  So... we focused on giving Scott a "quiet" day to day, allowing him to rest and recover.  It seemed a successful day in that way.  He did rest well and had more opportunity for rest today.  Since there are longer breaks in between nursing visits, he can get more rest in.  That is one perk!

We were successful in scheduling a case conference for Scott tomorrow with all of his disciplines in order to address the lacking communication.  We are hoping to have a better understanding of his plan of care, progression expectations, and discharge criteria/goals.  I want everyone on the same page.  I know I will feel much better after that.  I also want to be assured that there is a plan for his post-op follow-ups, since we are no longer in the same city as his surgeons.  They did request an orthopedic consult for his right shoulder at my urging.  The shoulder (AC seperation) was not diagnosed until right before we left ICU due to swelling issues.  He left before the orthopedist could examine him.  He has a very unusual contour to his scapular spine, not anywhere near the AC joint, so I just want to make sure that someone is thoroughly examining it, so we are not overlooking something. ..especially since he almost never raises that right arm.  He will move the fingers and elbow on occasion, but not his shoulder.  Anyway, I am pleased that the consult has been ordered.
If there is no additional fracture, PT will apply kinesiotape to the right shoulder to help stabilize the AC joint.  Scott does not tolerate the sling in his current state of confusion.  He constantly tries to pull it off.  He won't have the cognitive ability to be stabilize it with a pillow or opposite hand when he is upright, so the kinesiotape seems the best option... better than nothing, least invasive... one less strap/tube/etc to have to deal with.

His PR and BP have been elevated quite high today, we think due to pain.  Tylenol seems to settle him quite well and bring his numbers down to an acceptable range.  It will be nice when he can talk.
They tried to put a speaking valve on his trach today, but his current trach is too large.  They have to wait another week before they can put a smaller trach in.... It is probably looking like 2 more weeks before his trach is removed.  Probably the same with his PEG tube.  They increased his calories today since he has lost some weight.

We are unable and not allowed to use our cell phones in the room or on the floor.  We have to go to a common area to use them... We do think we have the Wi-Fi issues figured out, so I should still be able to get the daily blog done. Yeah! No functional progress today, but some logistical progress made today.

Other than that.... we expect tomorrow to be a better day.... we are hopeful....

We love you all!
Patti