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Posted 2015-10-16T05:36:17Z

October 15, 2015

So I stayed last night as he just needs me here & I wasn't sure what time they were going to do the insertion of the pigtail catheter (smaller chest tube) or what time dialysis was going to take place.  I also wanted to be here when Dr Kotloff & the Intensivists rounded.  Perry became disconnected from the vent 4 times so I was glad to be & able to respond quickly as it took awhile before there was a staff member present.

I woke up to hear the charge nurse & nurse manager telling Rachel RN, his day shift nurse, today that he was going to be moved to the Rescue step down unit.  Rachel said no to that as he's to have dialysis & then to have the pigtail catheter insertion procedure in Interventional Radiology that can be a risk.  There was absolutely no mention of such plan to us, her, Dean who was getting ready to start PT, the RT etc.  Dr. Kotloff soon rounded & stated he was ABSOLUTELY NOT to be transferred.  He apologized for all of the conflicting information from all of the teams.  He informed Perry of the findings of the diaphragm ultrasound as Perry was very tired & not absorbing what the Dr. had told me yesterday.  To reiterate, the R diaphragm is not functioning at all; it will take time to see if L diaphragm phrenic nerve is "stretched" or damaged/severed.  If it's damaged/severed, nerves do not regenerate so worse case scenario - he'll be vent dependent; if the nerve is stretched it can take months to heal ~6-8+ months. If his accessory muscles (neck & between the ribs) are strong then sometimes a person can come off the vent for parts of the day; & there are people who function on the use of one diaphragm & are not vent dependent.  Once again, time will tell.... was emphasized.  Dr. Kotloff also explained that if the pleural effusion fluid drained is watery then that will be good news & that is what is hoped for but if it's thick & gelatinous that's not good news.  So we will have to wait & see...  He was saddened to hear the news & the waiting will be hard.

Dean PT completed lower extremity range of motion exercises then Dean & Julio assisted Perry to stand 2 times. Since times for the chest tube insertion & dialysis were not yet known & Perry needed to use the bedpan, Perry was returned to his bed with the plan to put his bed into chair mode later.   Trach capping was not done today.  Kim from OT did not come.  Dialysis was a 4 hour session from ~1115a-315p with 3 liters of fluid removed.  Laura, the Music Therapist, came by & had learned the song “Truly” by Lionel Ritchie which was one of our wedding songs, so she wanted to play & sing it to him if he was in agreement.  He agreed.  When she asked his level of pain on a 1-10 scale, it was a “2”; his level of anxiety/worry a “10”; his level of shortness of breath, a “7”; his level of blueness/sadness a “9”; his mood on a 1-5 Wong scale (facial expression) was a “3”.  She also played one of his favorites songs, “All of Me” by John Legend.  After the session, his level of pain on a 1-10 scale, was a “0”; his level of anxiety/worry a “7”; his level of shortness of breath, a “7”; his level of blueness/sadness a “7”; his mood on a 1-5 Wong scale (facial expression) was a “2” - good to know that the music helped.  The massage therapist provided a foot massage shortly after dialysis ended which helped him to sleep soundly.  Rachel RN checked with Interventional Radiology with “a couple of hours” being the response she received as to when Perry would have chest tube insertion.

There was a little noticeable decrease in the myoclonus at times throughout the day.  He remained tired with increased sleeping also throughout the day.  Perry had not gone for his procedure by 630p & no further word communicated to Rachel RN from Interventional Radiology.  Hopefully he will be able to have it done tomorrow.  No Intensivists visited him today.  The evening came with the request for me to spend the night.  My request was to go to the Transplant House, eat dinner, shower & return to which he agreed.  So I am here now.   He has been sound asleep since 10p except for intermittently wanting to change his position or have occasional oral suction completed.  I am going to do the same now.

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Comments (1)

  • Lisa Lewis
    Lisa Lewis

    ... continuing to send positive thoughts and prayers to BOTH of you! The wait will be tough but you'll BOTH do it! Love you two! Miss knowing you are less than 3 miles from me ..

    4 years ago · Reply