Tuesday, September 22, 2015 Had dialysis from 840a-1210p to cleanse his blood as BUN was 71 & Creatinine 2.07 & given Lasix IV to facilitate fluid removal. Due to continued myoclonus, his dosage of Depakene was increased from 250 mg every six hours to 500 mg every 8 hours, so he received his first 500 mg dose @ 1100. He was very tired throughout the rest of the day. Perry would like to be able to meet both short-term & long-term goals. He of course focuses on the long-term goals of speaking, coming off the vent, getting out of J5-5 CVICU, & eating. For quite some time now, he has wanted to have structure & a schedule. Perry’s life previous to transplant consisted of a very rigorous & regimented daily routine. He has asked to sit upright on the edge of his bed for at least 4 times daily for 10-20 minutes or longer as tolerated. He’s not been tolerating sitting in the recliner for extended periods of time due to increased discomfort to his lower back, tailbone, & ischial spines (bones of the buttocks) as he waits for the lift team to return him to bed. His frustration level then of course mounts & after waiting for 1- 1 ½ hours he rightly becomes angry. I have continued to ask for the installed ceiling lift to be utilized to return him to bed but the nurses are not all trained on their use so Dean PT is the only one who has utilized the lift. I have continued to ask for his bed to be converted to chair mode to gain the benefits of sitting upright: to begin to develop his chest wall muscle strength, improve lung expansion, help re-establish the use of his diaphragm muscles, to improve posture, conserve his energy so that his nourishment is utilized to rebuild his lost muscle mass & fat, to decrease the need for pain medication which unfortunately zonks him out for hours at a time, & of course to take the delay of the lift team out of the equation. Specific requests have been made for a Tylenol order if at all possible & to lower the dose of narcotics as he has not required pain medication except for the the passage of gallstones weeks ago & pain related to lift team delays. These are quite simplistic requests & needs that would facilitate his progression from so many different perspectives. In the acute care setting, having the needed assistance when Perry is ready & capable for the length of time that Perry needs in order to meet his goals is a challenge. Perry requires support to get him to an upright sitting positioning to dangle, to maintain an upright posture & stabilizing with tremors & shaking, to complete exercises, to maintain alignment of his trach & his vent connection, to provide suction as needed. My sister had contacted Alistair Begg, a well-known pastor in the Cleveland area & other parts of the country for his ministry, to inquire if he or perhaps a member of his congregation would be able to minister to Perry & I while we are here in Cleveland. Alistair was born in Scotland, studied at the London School of Theology & served in pastoral ministry in Scotland until coming to Cleveland in 1983. He became the senior pastor at Parkside Church in Bainbridge, Ohio. He has written many books & part of his ministry is also TruthForLife.org. “Truth for Life” apps are also available if you would like to learn more. He is a perfect fit for Perry as he is a Beatles fan, loves the game of golf, starred in a movie about the golfer, “Bobby Jones: A Stroke of Genius” with actor Jim Caviezel who portrayed Jesus Christ in the film, “The Passion of the Christ” & he has a Scottish accent that is so great for a listening ear! Alistair surprised us with an unexpected visit us today. He was most helpful to the both of us & has plans to reach out to Dr. Lars Svensson, an internationally known cardiovascular & thoracic surgeon who is also the Chairman of the Sydell and Arnold Miller Family Heart & Vascular Institute at Cleveland Clinic. He also plans to contact a nurse in his congregation who would like to do some volunteer service. She may be able to fill in for me at Perry’s bedside thus allowing me to run errands & be able to visit with us on occasion too. We are blessed in so many ways. A quote I found on the internet from Alistair that is appropriate to our journey: “The disasters & apparent dilemmas of our lives, far from being isolated nightmares, are actually evidences of the unfolding purpose of God, fashioning things according to the eternal counsel of His will.” Perry was taken to the OR for the bronchoscopy around 530p. Upon his return to his room @ ~640p, I was informed that all went well according to the nurse & RT that accompanied him. The anastomosis sites (where Perry’s anatomy & the donor’s lungs were connected during the transplant surgery) looked good, lung tissue biopsies were taken, secretions removed & sent for diagnostic labs & cultures. He was comfortable, his feedings were resumed ~7p, & able to rest at ease afterwards. My plan to go to bed before midnight, which would have been a first since the transplant, was changed when I got a call from the Intensivist @ 1120p stating that Perry had had an episode of unresponsiveness lasting ~½ hour with the inability to awaken him with shouting & painful stimuli, & had experienced a significant drop in his blood pressure. He had regained consciousness by the time of the Dr’s phone call. He was given tissue plasminogen activator (tPA) a drug which breaks up or dissolve blood clots, in case he may have had a heart attack &/or stroke. A troponin level was drawn to measure if troponin proteins had been released as occurs if the heart muscle has been damaged, such as occurs with a heart attack - which came back normal. He also received Albumin IV to expand his blood volume to increase his blood pressure. A brain CT was completed prior to my arrival with the preliminary result on CT indicating that the soft tissues were grossly normal (what we want =a good result). He was able to nod his head that he heard my voice, squeezed my fingers & wiggled his toes, & returned immediately back to a sound sleep. The event may have occurred as a result of many factors combined: 3 ½ hours of dialysis; anesthesia for bronchoscopy; lack of nourishment for 15 hrs on Monday in the event he would be added to the bronch schedule; formula feedings held at midnight for bronch today so resumed feedings @ ~7p so had additional 19 hours without nourishment; he was started on an increased dose of Depakane 500 mg dosage @ 11a & 10p today; he had his Klonopin, Seroquel, Keppra which drop his BP & put him to sleep almost immediately; & I also learned he has continued to receive Melatonin to help him sleep which has not been an issue that I am aware of for quite some time. He remained in a very deep sleep & had neuro checks done every 2 hrs which were otherwise normal.