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.
Perry had an uneventful night. As a result of yesterday's incident, Perry had requested his night shift RT to leave a note on his vent for the day shift RT not to start him on trach collar breathing until I arrived at 9a. Perry was getting a bit anxious when I arrived @ 905a as the RT was at his bedside planning to start & it took me awhile to calm him down. Perry also has certain therapists with which he is not comfortable, so he was anxious for that reason too. He was mouthing sentences a mile a minute & in need of breaking up his accumulated nighttime post-nasal drip which is hard for him to clear with the trach in place & not able to mechanically clear his throat with the cuffed trach, so he kept me extremely busy with lip reading & oral suctioning. By 10a, he too was exhausted, so it was good that we were both able to close our eyes for a few minutes holding hands. I had missed getting to see Dr. Akindipe (lung transplant pulmonologist) this week during his rounds but I got to see him this morning. Since he had not been on hospital service for a while, he expressed to me how happy & so pleased he was that Perry was still alive & progressing as the last time that he had taken care of Perry all of the doctors were not sure if he was going to live or die. He does not want Perry to be doing trach collar breathing now as he feels he needs to gain more strength & nourishment in order to do so, & he wants the diaphragm specialists to re-evaluate him. Due to his kidney function & levels, he feels intermittent dialysis will be necessary for still quite a while. Unfortunately every week a different Dr is on hospital service & many of the Drs do things differently & the plan gets changed according to who is on each week. I wholeheartedly agree with Dr. Akindipe & trust him as he's known Perry for the longest time with the exception of Dr. Budev. Perry has not had a bronchoscopy since his transplant on 7/27. Initially, his first bronchoscopy was to have been done by Dr. Akindipe on 8/5; however, we all know why it did not get done on that day or since that day. A bronchoscopy is done to check the lung tissues for signs of possible organ rejection of the lungs, to help remove additional fluid collections deeper within & throughout the lungs, & also helps to rid any mucous plugs. It is a "routine" sterile procedure done post-lung transplant under sedation & repeated rather frequently post-transplant. Under "normal" circumstances, Perry would have had several by now but.... "normal" has not ever been a part of his course. Hopefully he can be added to the schedule tomorrow. Kim & I took trip to Bed Bath & Beyond & got Perry an Extreme Wondergel seat cushion, a Verilux HappyLight, & a step stool to facilitate his recovery. The HappyLight is a Natural Spectrum illumination light that will help with seasonal change, the "winter blues," malaise & fatigue & gently cues the body to recalibrate & stabilize, naturally reducing fatigue & lethargy while improving focus & concentration. It will benefit us both in the many days & many months to come that we be part of this journey. It was good to have Michael & Kim here for the both of us. We saw a few smiles, & Perry got to speak briefly this afternoon with the diligence of Matt RT & hard work on behalf of Perry!!! Also later this evening Perry had been asked if the Bears won today, & he answered "yes" & was insistent that they had won despite me telling him that they hadn't - so he must of had either a good dream or perhaps the year was 1985 today too (sometimes the year has been "1985" & not 2015 when he is being asked questions to determine his level of orientation). I haven't moved to the other apartment yet as the child of the family in that apartment is having complications so their move to the Ronald McDonald House has had to be postponed. Lots & lots of families are undergoing significant life & death battles here in Cleveland & all around us all!!!! Prayers are so important to us all!!! We will continue ours on behalf of all of you too!!!!
Nathan RN reported that Perry awakened about 2a & was up for a couple of hours otherwise an uneventful night. Matt & Ally came for a visit (friends of Ryan who both work at the Cleveland Clinic). Matt called to tell me that Perry (Mr. D) missed me & wanted me there. Upon my arrival, I was greeted with a lasagna & Italian cookies by these 2 sweethearts. Perry was up in the chair upon my arrival & tolerated being up for ~3 1/2 hours with the eventual arrival of the lift team. With it being the weekend, there was no scheduled OT or PT so I provided his exercises throughout the day. The RT who had him during day shift was not an RT that I was familiar with caring for Perry. He wanted to have Perry trial the Passy Muir. Upon the trach cuff deflation, Perry almost immediately struggled with ridding secretions and may have aspirated as he began to mouth "I can't breath," suddenly became hot & diaphoretic (sweaty) & purplish redness to his face with facial vein protrusion, & decreasing oxygen saturations to the lowest of 70% - so I immediately requested back up. With additional trach suction, oral suction & the resumption of oxygen via vent, his saturations improved to the 90s & back up to 100%. Throughout the next several hours, Perry had frequent coughing with intermittent difficulty as he coughed & required more frequent trach & oral suction. Not wanting to have to wait any longer to be sat up at the edge of his bed, Perry began edging his way to dangle his feet over the side of the bed @ 415p & pushing the call button for the nurse. He is not at all happy when I reinforce that he must be assisted by staff for safety reasons & when I have to confine him & halt his movement as he waits for staff to arrive. He was assisted to sit at the edge of his bed by Rachael RN & myself for ~25 minutes at 430p which he tolerated remarkably well with occasional body tremors & twitches. He was able to take a nap before Michael & Kim arrived. After napping, he asked Sebastian RT to allow him to try trach collar breathing which he was only able to tolerate for about 7-10 minutes before he began to struggle with his breathing, becoming pale & again diaphoretic with facial forehead vein protrusion. Matt RT responded with quick assistance to convert him back to CPAP with a return to baseline. Michael & Kim arrived @ ~6p. They were happy to see changes in his outward appearance & color. They visited until ~9p before he was settled in for evening & ready to get some much needed rest.
9/18 Hannah RN informed me Perry awakened at 2a & was still awake at time of her call @ 632a. During his morning OT session with Kim, he was assisted to sit at the side of his bed for 30 minutes & was assisted to begin to wash his face. He has been experiencing an increase again in the frequency & intensity of the hand & feet tremors since yesterday so it is a very challenging task to begin as he also has to develop & strengthen hand, arm, neck, shoulder, & abdominal muscles. His formula feedings have been at 60 mL/hr for the last 2 days as his abdomen is becoming distended to about a 9 month pregnancy comparison. Bill RT kept him on CPAP & chose not to do trach collar breathing to avoid increasing his abdominal distention. He did not trial the Passy Muir valve today. Bill has been pleased with Perry's tidal volumes on CPAP throughout the last week. Tidal volume is defined as the volume of air that moves in & out of the lungs during quiet breathing. During PT with Dean, he was transferred onto a Moveo XP Exercise Platform. During his session, Perry was able to accomplish 25 downward then upward leg exercises. Very, very hard work but a huge sense of accomplishment. Moveo XP Exercise Platform: https://m.youtube.com/watch?v=WbP3mHwcmeo&autoplay=1 Almost immediately after PT, he began 3 hr dialysis to cleanse his blood & not draw off any fluid as his BUN was 72 today (normal 10-25). BUN=blood urea nitrogen reveals whether your kidneys & liver are working properly. He may have to have a new femoral artery catheter placed for future dialysis as it has been very sluggish & started to clot off this evening but it was able to be revived with an emergent medication. The Intensivist that is covering J5-5 CVICU this evening had not taken care of Perry since shortly after 8/5. He was reviewing Perry's medical record for an extensive period of time. He came in to see him, stood at the foot of his bed in awe & said to Perry several times "You are a remarkable man!!!" At 1000p, Perry was able to accomplish his goal of sitting upright on the edge of his bed to dangle for a total of 45 minutes today - a very long & productive day. As he was becoming increasingly drowsy, I couldn't figure out the word "swab" which I swear looked like "throb!" He became very upset that I wasn't getting it. Then I had a light bulb moment - He wanted me to ask Nathan RN for a "swab" dipped in ice water to moisten his mouth. I may ask Michael to bring our punching bag from home so Perry can get out his many frustrations. (Dean thought it was a good idea too) "I coulda been a contender!" http://youtu.be/URS6f0SeZ_w