October 5, 2015 Per Lora RN, Perry slept for longer intervals although he was still up frequently during the night. His trach adapter disconnected several times from the vent circuitry which set off the vent alarms, & he was aware to press the call light when the nurse was not able to respond immediately & had managed to throw a couple of pillows onto the floor to create noise in hopes of a response. He had been placed on CPAP setting (continuous positive airway pressure) throughout the night which was a change from other nights.
During PT in the early morning, he completed leg exercises leg & dangled for quite some time with much less wobbling today compared to yesterday evening. Bonnie, his day shift RN had stated he was undergoing PT & she needed to give his medications so I needed to wait to visit - which of course did not settle well with me, so informed her that unless he is being started on or coming off of dialysis & in the midst of a sterile procedure or other incidents on the unit, Perry expects my presence & I expect to be with him. He was assisted to a stance by Dean & Melissa but not able to stand tall & was pivot assisted into recliner chair. While in the chair, he was able to tolerate ~30 minutes of trach collar breathing but had lots of nasal flaring & labored neck & shoulder accessory muscle use & required frequent trach suctioning of somewhat thicker secretions & oral suctioning intermittently by Matt RT. Dean provided return to bed using the ceiling track lift & sling. He then continued with a few minutes of trach collar breathing & then trach capping for a short interval with less labored breathing noted, significant decrease in nasal flaring, accessory muscle use, & exaggerated mouth breathing. He spoke the words, “I’m tired!” He was exhausted & fell asleep shortly after being returned to the vent. He has been tired today as well & still having an increase in mouth/tongue & hand/arm tremors.
As I was departing to go pick up my mother from the airport, Kim RN, APN came up for a quick visit with us. She is the Specialty Care Coordinator RN affiliated with Dr. Mazen Hanna, Perry’s Cardiologist & instrumental in his care pre-transplant during many of his admissions & outpatient appointments. It was good to see her cheerful smile!!!!
Mom & I lunched at Five Guys & then completed miscellaneous & grocery shopping. Dropped off the groceries etc at the Transplant House & then visited with Perry. While we were gone, he completed 2 additional trach collar breathing episodes totaling ~1 hour. And had an Occupational Therapy session. He was very tired during our visit & requested my return @ 730a. Dan RN, his evening shift RN would be caring for him until 11p. A physician present during his transplant stopped by to inform that he would follow up on the need for his trach to be changed.