Sunday, September 27, 2015 Another uneventful night for Perry. Emily was Perry's day shift RN. The last time that she had taken care of Perry was after he was transferred from Room 13 to Room 7 on the morning of August 5th, the truly eventful day. Dr. Lane (Transplant Pulmonologist) informed me that he was going to order a low dose of Reglan to be given daily to facilitate bowel motility due to Perry's continued abdominal distention. Should Reglan not be effective perhaps DomPeridone may be recommended which can be obtained from Canada @ $60/month out of pocket as it is not approved in the United States for such use. Perry was able to complete 15 minutes of trach collar breathing this morning which required lots of praise & encouragement & was very difficult due to his abdominal distension. An EKG was done @ ~1110a to check Perry's heart QT segment as possible side effect of Reglan is a prolonged QT segment. As of today, only the RT is to provide trach suctioning to prevent lung complications as his chest X-ray is indicating a pleural effusion which is a buildup of fluid between the tissues lining the lungs & the chest. I asked for the newly ordered scheduled dose of Reglan be held as Perry had 3 loose liquid stools already today possibly related to the IV Reglan given on Friday as well as Colace having been given & not held despite loose stools. Sam & Nick visited with Sam experiencing increased pain & difficulty weight bearing on L hip/leg. With a long ride home ahead & the need to be able to transport Sam to & from the car, a wheelchair was eventually obtained from hospital administration. Goodbyes were said with our hopes & prayers that things will go well for both Sam & Perry & that their next reunion will be under better circumstances with both of them having made significant health related progress!! Perry remained extremely tired throughout the rest of the day, took frequent naps, & mouthed,“I feel out of it.” The fact that he asked me to turn on the Bears game did show a hint of progression & that he may be turning a corner as he's showing interest in some of his favorite pastimes. He expressed repeatedly, “I need you here with me!!” which melted my heart & allowed me to reassure him that we are in this together & that although there is lots of hard work ahead there's nowhere else that I'd rather be than with him!!! Thank you God for all of your miracles & the love, support, & prayers of our families & friends!!!! Nick & Sam made it home later than expected as the keys were accidentally locked inside the car at a rest stop during a transfer into the wheelchair. God has a way of encouraging us to have a sense of humor even when we do not find things funny at the time. Laughter is the best medicine, & we are so ready to laugh!!!!! The "Blood Moon" occurred this evening.[...]
Saturday, September 26, 2015 According to Perry, he slept well & had an uneventful night. Jackie, his day shift RN, informed me that an abdominal KUB X-ray was done due to abdominal distension. He continued to nap shortly after my arrival & into the early afternoon. I put Perry's bed into chair mode to increase his ability to tolerate trach collar breathing which he had not done for quite some time. He struggled during the 2nd ½ hr but was able to make it for 65 minutes total with applications of ice cold forehead wash cloths, lots of encouragement, & praise. He immediately fell asleep once I reclined his bed out of chair mode. I learned at 120p that it was just Sam & Nick that were coming to visit & updated Perry their ETA was ~330p. At 320p, Nick called to inform me they had arrived; however, Sam had taken a fall in the hospital's lobby as heading to the bathroom due to the very slippery waxed floors & the soles of Sam's shoes not gripping the floor. He sustained an injury to his L forehead, L forearm, & L hip & had to be taken the the ER via ambulance. I returned to inform Perry that Sam was being taken to the ER & reassured him that fortunately Sam did not have a loss of consciousness, but that he did hit the floor rather hard. I then joined Sam & Nick in the ER (in building across the street) as Sam's history & physical assessment were completed. Upon my return to Perry, the RT informed me that he had Perry do trach collar breathing again; however Perry struggled to complete 15 minutes due to my absence & anxiety in regards to Sam. Under those circumstances, Perry did awesome!!!!! Results of Sam's head CT scan was thankfully negative & the L hip X-ray revealed a questionable fracture. At 710p, father & son were finally able to be reunited with both of them very happy to see each other. It was a truly heartfelt moment to witness as they had not seen each other (except via FaceTime) since we left home for Perry's admission on July 13th to be approved for a 1A heart status listing with UNOS. Many thanks to Nick for all of his help & hard work to help make it all happen!!!!! We settled Perry in for the night, & then Nick & I settled Sam in for the night after a bite to eat at the hotel & Nick making 2 trips to the pharmacy to get Sam's pain medication prescription filled. Like father, like son - it's all about love of family!!!!! We are both blessed, & I enjoyed getting to comfort my father-in-law as we talked about many things that were on Sam's heart & mind as we held hands.
Friday, September 25, 2015 Perry was reported to have slept throughout the night. He underwent dialysis from 730a-1130a. Additional decreases in the dosages of some of his medications were requested as he has continued to be extremely tired. The nephrologist anticipates that perhaps his next dialysis session may be Monday or Tuesday. I informed Dr. Lane (Pulmonary transplant) about Perry's colonoscopy done last October in which found polyp not having been removed for biopsy in the event that the ongoing abdominal distension & other GI signs & symptoms are related. During his OT session, he was transferred by Kim & Rob into the chair. Shortly afterward, he became nauseated & received Zofran. Leg exercises were completed with Rob & arm/hand reaching exercises were completed with Kim. He was then returned to bed & fell asleep almost immediately. The intensivist, Dr. Dar no longer wanted Perry to be trach suctioned by an inline method by the nursing staff, so special catheters were utilized to suction him only by the Respiratory Therapist. Another Metabolic Cart was ordered to be done; however due to few staff being trained to do them & the need for his feedings etc to be stable for at least 12-24 hours, it will not be done today. He remained very tired throughout the entire day with frequent long naps taken. His night shift RN, Dan, was floated from another ICU to the CVICU due to a low census. Perry was sound asleep at my departure ~10p. I am hoping Perry will be able to be alert during the weekend as he has been anxious for a planned visit with his father Sam, Char, Nick & Tonya. I've asked for special permission to be granted if at all possible for more than 2 visitors at a time as it will be very difficult for Perry to communicate without the help of some of my lip reading skills.
Thursday, September 24, 2015 Perry continued with deep sleep the entire night but was able to be aroused, able to only briefly open his eyes, wiggle his toes, & squeeze fingers for night shift neuro assessments for Lauren RN. The 20 minute video surveillance EEG was completed in early AM. Later in the morning when he was more awake, he was sat up on the side of the bed to dangle by 2 Nursing Aids & me, & I washed & massaged his back. He was been able to follow commands but extremely tired. By noon he was back to sleep. There's been so many challenges affecting some of Perry's progression mostly related to: time needed for healing; strengthening of atrophied muscles; nutrition; medications; Perry's specific needs for medical, nursing & therapy rehabilitation as well as intermittent acute care; timely resources for physical movement & activity assistance needs; so called "too many cooks in the kitchen" with all the different physician teams rotating & each with their own practice of medicine & personalities; improved active listening skills as well as effective communication of diagnostic results & plan of care; the ongoing highly stressful environment & acuity of the patients being served in J5-5; & the need for "individualized" patient-centered care of the “total” person with multiple complex conditions. Needless to say there’s been a few stressful interactions that have occurred over the last few days. As of today, I now finally have "a go to intensivist physician" for any further issues, problems, concerns & of course compliments. He happens to be the same physician who acknowledged that Perry is a true miracle so God is present & helping me to recognize & develop trust in the medical team & that He's got this covered. The doctor & I had a chance to work together to make changes to Perry’s medications & dosages, frequency of activities as tolerated by Perry, & with Perry's goals at the center of his care too. He provided me with his cell phone number. Although there’s been some “good, bad & ugly” along the way, Perry & hopefully many other patients will be able to benefit as a result of resolution of some of the many challenges we both have encountered. We are "Onward Christian Soldiers" with lots & lots of HARD work ahead. Since I've been in the same clothes for 3 days, Perry was able to acknowledge only with the subtlest of a nod that he could hear me say that I wanted to go home to the Transplant House, shower, take a nap, eat, & come back. Thank goodness he also nodded that it was okay. There was a note from the Transplant House that had been delivered to my door that they were going to be having a "pot luck" dinner @ 630p. I didn't have to cook, & I was glad to share Sanders Dark Chocolate Sea Salted Caramels as I met some of my "neighbors." Upon my return that evening, he was asleep but able to awaken easily. He later aroused & started to watch Law & Order SVU which he had not shown an interest in doing for weeks, so that was a really welcomed good sign.[...]
“Wrigley found his way into my garden this am and came out with a piece of the fence around his neck! He just stood still on the patio waiting to be rescued with the "busted" look on his face! Too cute! Hope today is a good day!💛💛”
Wednesday, September 23, 2015 I remained on vigil during the night beside Perry taking a few brief winks. He did well throughout the remainder of the night & early morning arousable from a deep sleep with much effort but responsive, oriented to self, person, place, month & @ times the correct year (it’s either 1985 or 2015 - the year varies but that's not unusual for him for all that he has been through. He was able to follow commands & his neuro exam essentially normal except for myoclonus. Alistair Begg had contacted Dr. Lars Svensson who came to meet & greet Perry @ ~645a. How wonderful is that? God is good!!! My dear neighbor sent me a picture & text @ 0724 that brought smiles & much laughter. Refer to the picture of my furry baby boy. I’m so glad that Karen is nothing like Miss Gulch from the Wizard of Oz. “Wrigley found his way into my garden this am and came out with a piece of the fence around his neck! He just stood still on the patio waiting to be rescued with the "busted" look on his face! Too cute! Hope today is a good day!💛💛” A Neurology physician consulted this AM relative to last night’s mental status change. I provided her with additional information that she had not been made aware of pertaining to his previous EEG’s & those related mental status changes. She was pleased with his neuro exam. Dr. Koval from Infectious Disease came to see Perry & informed me that there was a variation on Perry’s brain CT scan in area behind his eye but that it may be artifact, or a variation that may be a part of his make-up, or something that may be of concern. She felt much more confident after having seen him & completed a neuro exam but is going to ask the dayshift radiologist to review the CT scan as well. She suggested an MRI but Perry has metal in his foot so not sure yet if they will need to proceed with another diagnostic or not. No other Drs came to tell me anything since the morning. While I was gone to get something to eat, I listened to a pianist & flutist perform a few songs from the Sound of Music, & special requests “Twinkle, Twinkle Little Star” & “Can You Feel the Love Tonight” for a little child in a wagon who was a patient which melted my heart. Upon my return, Perry told me “4 doctors came by & told me they were worried about my brain.” He did not recall last night's episode. His nurse Rachel was busy with another patient. He's supposed to have another video surveillance EEG but it was not entered as a STAT so she didn't know when it was going to be done. We had 2 afternoon visits. Ally who is a newly employed Physician’s Assistant for ENT here & girlfriend of Matt who is Ryan’s friend from early childhood & a dentist at the Cleveland Clinic. She is a sweetheart & brought me a pasta salad. I received a call this morning from Lois who is the nurse from Alistair Begg’s congregation, & we planned an afternoon visit depending on how the day progressed, so we were able to have a meet. She was delightful, & she & I have much in common. Once again a welcomed blessing. Perry was extremely tired, napped intermittently but was responsive to stimuli & commands. He's not producing much urine today only about 10-20 cc/hr (30+ cc/hr is what kidneys are supposed to be putting out) but since he had only 300 cc formula (Tuesday) & 720 cc formula (Monday) instead of the 1440 cc, he's dehydrated & after dialysis that his kidney output drops, so not too concerning. Perry had asked me to stay tonight so here is where I will stay for tonight. I will bring a change of clothes to have on hand in the future. Unfortunately I had fallen asleep for probably 20 minutes & awakened just as Perry was being given Oxycodone 10 mg for pain ~710p. I told the nurse that he hadn't complained to me earlier about having any pain, so when I asked him if he was having pain he looked at me with that oh so dumbfounded look 😳 (not the right emoji as the eyes should be crossed & appear as a ridiculously stupid Jerry Lewis or Jim Carey facial expression) & he mouthed "I need the bedpan." Almost immediately Perry was out for the count. I learned that he had been getting Oxycodone & Fentanyl for pain on recent nights, & since he's not had any sort of pain indication all throughout the day except when he's had to wait for the lift team I'm wondering if he's been saying "bedpan" & it's been interpreted incorrectly as "pain" - that I cannot say for certain but it is suspicious since he’s not reported any pain issues to me. Nurses are also supposed to ask how you rate your pain on a 1-10 scale & where are you having pain, so I would think that if he had been asked he would have given them that same dumbfounded look. He was able to only slightly move his head, raise his eyebrows, or very slightly wiggle his toes during his neuro assessments. Needless to say, I didn’t get much sleep.
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.
I got good news from Steve RN that Perry slept until midnight & was up for a short bit, received his medications & soon afterward returned to sleep. He was still asleep at 740a. Perry's formula feeding was turned off at midnight as it was uncertain as to when he might be added on to the bronchoscopy schedule. Prior to my arrival, Kim OT had been in for session & had gotten Perry to dangle on side of the bed & worked on hand exercises. She added a foam adaptive grip to the oral Yankauer suction catheter to allow Perry to become more independent doing his own oral suction as he has been in need of increased oral suction to remove saliva, acid reflux, & post nasal mucous drainage. He requires hand over hand assist to prevent injury to himself as well as to grip & hold onto the catheter, & to provide arm movement assist. The nutritionist was in briefly & our conversation was cut short as Dr. Lane, this week's Transplant/Pulmonology Attending physician arrived. We made him aware that Dr. Akindipe had discussed with us that Perry was to be scheduled for a bronchoscopy in the OR today if possible. Dr. Lane's team had not been informed of a time as it being a Monday it may not occur. We also informed him that Dr. Akindipe did not want Perry to be doing trach collar breathing until he's much stronger. I requested that he write an order for Perry to be dangled at least 4 times daily to facilitate his progress & expressed concern that such has not been the case. I also mentioned to Dr. Lane & the team that Perry had undergone dialysis on Friday for a BUN of 72 & higher creatinine level as the resident presenting Perry's case in rounds this morning stated it had been a week since he had been on dialysis. I also mentioned that Perry's femoral IV line has been sluggish & almost clotted off on Friday with medication needing to given to reduce clotting to increase their awareness. Dr. Lane stated that the myoclonus (jerks/twitches) are most likely the result of the ProGraf which I informed him that was contrary to what Dr. Valapour had informed me of when I specifically asked that question & she had said the ProGraf tremors are typically fine (slight) tremors. Dean PT provided range of motion exercises to his legs & then with 2 other assistants helped Perry with leg presses with the Mini Shuttle Press. He was then raised by Dean to a brief stance & pivoted him into chair with a lift sling, sheet, his new seat cushion beneath him & an extra pillow & another seat cushion behind his back. It was the best positioning in the chair he's had to date. After ~45 minutes, Dean utilized the ceiling lift in his room to return him to bed which took ~5 minutes instead of 1-1 1/2 hr wait for the lift team. I was elated that the existing ceiling installed lift resource was finally utilized. At ~1230p, Jack from RT came in with the intention of putting Perry on the trach collar breathing for 20 minutes per Dr. McCurry's order to which I reinforced that Dr. Akindipe did not want him on trach collar until he is stronger & that I had mentioned the same to Dr. Lane. I requested for Dr. McCurry to contact me to ensure that he & the pulmonologists had conversed & to make sure he knew that Perry had been off of his feeding for 12+ hours. Reluctantly Jack RT stated he would contact Dr. McCurry of my request, but that it is Dr. McCurry who is Perry's Attending Dr. who determines his orders. At about 3p, we learned that he would not be going for the bronchoscopy today (Monday) & not yet given a scheduled time when he would have the bronchoscopy, so his feeding was resumed at 60 mL/hr. At 405p, he was dangled by 2 Nursing Assistants & me. Dr. Lane returned ~6p to inform us that Perry was scheduled for the bronchoscopy Tuesday @ 330p. And that he agreed with Dr. Akindipe that Perry was not ready for trach collar breathing as discussed in a team conference of the pulmonologists & that Dr. McCurry has been out of town & not fully aware of Perry's progress as he has not been here to see him. I was able to complete my move early this AM with the help of Karla whose husband had lung transplant & was next to Perry in the CVICU & is making great progress. I got to bed this morning ~4a so need to be on my way soon for my 9a requested appearance by Perry. I called to have the nurse inform him I will be there shortly. Nathan reported this morning (Tuesday) that Perry had fallen asleep watching the Cubs game & slept well until 2a. Perry was becoming very frustrated with trying to complete his oral suction so Nathan assisted him & eventually Perry was able to calm down & return to sleep. He is to have dialysis this morning & his feeding had been stopped at midnight for the bronchoscopy.