Hannah RN reported that Perry awakened @ 3a & remained awake for a couple of hours. Otherwise an uneventful night. During the morning, he was placed in a sitting position with bed conversion to a chair. The Passy Muir was applied briefly, but due to low oxygen saturations to 80%, it had to be discontinued. The RT plans to give Perry another attempt tomorrow. He later completed ~30 minutes of trach collar breathing. During his PT session, he was assisted to a standing position by Dean & 2 other staff members also providing assistive support. He was then assisted into the bedside chair @ ~9a. He seemed to tolerate being up in the chair until ~1200p & requested to be returned to bed as he began to experience lower back & sacral pain due to his arthritis & lack of muscle/fat padding. It was then that we learned that the lift team breaks for lunch from 12p-1p. Despite me applying warm packs, repositioning him, & providing massage, his pain increased to a "10" on 0-10 scale. He received pain medicine shortly before being returned to bed @ 130p with the arrival of the lift team. He fell asleep within minutes of being returned to bed from exhaustion. Kim from Occupational Therapy provided passive range of motion to his upper extremities as he remained soundly asleep @ 3p. I discussed with her the need for Perry to be provided with adaptive tools for communication until the Passy Muir becomes a viable option for speaking & measures to allow him to begin to participate in basic activities of daily living (ADLs) so that he does not become more deeply depressed. I also discussed the need for Perry to be able to meet goals that he desperately wants to be attaining, should be attaining, & is capable of doing with staff & my assistance such as sitting at the edge of his bed to dangle for at least 15 minutes 3 times a day so that he can develop his abdominal core muscles which is essential to help get him off the vent. I discussed the extreme importance of a schedule for Perry as he had requested such yesterday & due to the fact that had to follow a very regimented routine because of his health needs prior to transplant. He is in desperate need to have some aspect of control now in his life for a sense of accomplishment & progression. She will plan to coordinate with Dean PT so that she can also begin to start to assist Perry with some basic daily activities such as washing his face & combing his hair with adaptive measures during the earlier AM hours. She also plans to help dangle Perry so that he can accomplish the goal of dangling at least 2 x a day with the help of therapists. I will be moving to a lower level apartment at the Transplant House on Friday so I will be occupied with cleaning this apartment & a few additional tasks to complete that move depending upon the time that other apartment is vacated. In the meantime I'm in need of some sleep.
This photo was taken & shared by Perry's brother, Nick. These are babalucci (🐌 Snails)....the significance... After Perry's 2nd heart surgery at the age of 9 years, he wanted babalucci. And so his parents saw to it that he got all the babalucci he could eat! AND, Perry truly enjoyed grossing out all of his nurses as he ate them!!!! "Waiter there are snails on her plate!!!!!" A quote of Nathan Johnson from the movie, The Jerk
Erica RN's morning update indicated Perry slept fairly well throughout most of the night. No significant changes occurred. He had PT in the morning & was assisted into the bedside chair after PT & was lifted back into bed prior to my arrival. He was very tired throughout the entire day. He was starting to experience an increase in bilateral hand tremors compared to recent days. Dr. Adi contacted Dr. McCurry, who is out of town, regarding the findings of the recent chest CT. He will be able to review the CT remotely for additional recommendations; however Dr. Adi is pleased that Perry is otherwise not showing signs & symptoms of significant concern & feels an invasive evaluation of the fluid collection could lead to more risks vs benefits. He also mentioned that due to nerves being affected from removal of a donor heart & those of the recipient's original heart, it is not unusual for a transplanted heart to have higher heart rates. The Speech Therapist recommended for RT to determine whether Perry may be able to utilize a Passy-Muir® to facilitate communication, but she did not provide an actual evaluation as I had expected to determine other methods that could benefit Perry based upon his current capabilities. The Passy Muir is not typically utilized in the CVICU. RT plans to evaluate if it may be a possibility for Perry hopefully tomorrow. Sited from www.passy-muir.com: "Invented by a patient named David Muir, the Passy-Muir® Tracheostomy & Ventilator Swallowing and Speaking Valve is a simple medical device used by tracheostomy and ventilator patients. When placed on the hub of the tracheostomy tube or in-line with the ventilator circuit, the Passy-Muir Valve redirects air flow through the vocal folds, mouth and nose enabling voice and improved communication." Additional Passy-Muir information is available on You Tube @ https://www.youtube.com/playlist?list=PL0137BE00D6BF8DF8 We will miss one of Perry's great nurses, Summer RN, who has accepted an Advanced Nurse Practitioner position with Cardiothoracic Surgery. She came to say goodbye to Perry, to wish him all the best, & to tell him how proud she was of him & for all the progress that he has made. Tears, tight embraces, & sincere thanks were given by me & on behalf of Perry for her all of her superior, conscientious, & compassionate care given to Perry!!! Perry mouthed that he was ready to go to sleep for the evening at 730p, but due to shift assessment, medication administrations, bodily functions & need for cleaning, positioning, repositioning, oral care etc, he was finally settled in for the night by 945p.
Sarah RN's morning call indicated that Perry slept rather soundly most of the night awakening only for brief intervals & to take his anti-rejection sublingual (under the tongue) medication. His morning labs were somewhat stable. The Infectious Disease Dr saw him today & told me about a collection of fluid on his L lung seen on the CT scan done a few days ago. She is requesting Dr. McCurry (Cardiothoracic Surgeon) to review it in more depth. His heart rate has been in the 100-110s for several days, he's felt feverish as well as having frequent bouts of hot spells wanting to be without clothes or covers. However, on a good note, his white blood cell count has not indicated a significant rise. Another Metabolic Cart was completed early this morning to determine his nutritional needs. His formula feeding was increased to 40 mL/hr this AM to see if he was able to tolerate that volume without nausea as his abdomen remains distended. He continued to burp frequently with lots of acid reflux & did have a few loose stools today. No nausea developed so feeding volume was increased to 50 mL/hr by late evening. Neither the NG tube nor the FMS have been reinserted. He was able to tolerate being on CPAP for most of the day today. Was up in the chair from ~2p-530p but wanted desparately to return to bed by 330p due to his Rheumatoid Arthritis discomforts & lack of any padding on his body frame. He was very dissatisfied waiting for the lift team for 1 1/2 hrs to return him to bed despite comfort measures of massages, medicine, warm packs, & repositioning. Dean PT worked with him this morning with the hopes that he might have been able to assist him to stand for a few seconds, but Perry tired easily & does not yet have the leg strength to stand. He was rather alert for most of today & continued to mouth lots of sentences. Unfortunately as mentioned before, many consonants are difficult to identify with lip reading & especially when he over emphasizes them as a result of his increased frustration. I tried a lot of different things today to see what he could do to communicate. He's not able to write letters due to lack of hand strength, inability to grip with adaptive foam devices, & hand/arm tremors which although significantly less than previous are a factor. He has trouble pointing to letters on the enlarged flat surface keyboard placemats that I had created due to the same. He is able to spell & recognizes letters of the alphabet, but that takes too long & he loses patience quickly which becomes a source of more frustration. I requested for the Speech Therapist be notified for an evaluation so that adaptive augmentative resources could be recommended. I will purchase them as it is inappropriate to have to wait until he is released from the acute care setting, then go to the step down unit, & then placed in a rehabilitation setting before such are provided. It is uncertain how long it will take for his body to be physically capable of coming off the vent completely in order to be discharged from the CVICU. To have to wait to be given such tools & resources is psychologically & physically counter-productive & destructive to his progress. Frequent repetitive questions that are perplexing his mind arise partly because of the ICU delirium & processing delays. "When am I going to be able to be off the vent?" "When can I talk?" "When can I eat?" & "Why can't I eat?" Unfortunately, it's going to take a lot more time before these questions can be answered 😕. We are hoping to arrange a visit with his father & Char in the near future if at all possible as they too will be undergoing surgeries, & it will be a very long time that they will be able to be together due to each of their recovery processes. Wishing everyone lots of sunshine & the ability to take in as much of the remaining days of Summer as possible!!!! 😎🌻🌿🌳🐝🐜🐢☀️🍓🍒🍊🍑🍉🌽🍅⛳️⚾️🏈🚣🏼🏄🏽🎣🏊🏼🎢🚲⛵️🚜
To All of Our Family & Friends.... You are ALL the absolute most that we could ever have asked for in this life & the next!!!!! Thank you for being with us & supporting us, & loving us. May you all know that we dearly love you & so wish in our heart of hearts that we can give back to you what you have so freely given to us!!!!! On behalf of my love, Perry Joseph Paul DiGiovanni, & myself & in the words of the Beatles........ "All you need is love!!!!" http://youtu.be/dWTPXtuQ580
He slept fairly well last night. He did not have to receive any Propofol to settle him down, but he did receive Haldol to keep him calm & confined in bed as well as the use of soft restraints. He had PT prior to my arrival today & was assisted to sit upright on the side of his bed which I'm sure felt good!!!! It took him awhile to open his eyes for me today, but he did on several occasions throughout the day & at times he was mouthing a few sentences. I asked him to look over at the mirror to see the blue sky which he did. When he was & wasn't lucid, he was still trying to get those legs over the side of the bed to get a clean break & became very upset according to his facial expressions that his legs were placed back in bed each time. His formula feeding rate was decreased to 30 mL/hr all day & they were contemplating whether to pass an NG tube due to abdominal distension & bouts of nausea which occurred Sunday evening. It was not placed while I was there today. He was able to communicate to me this evening that he needed to use the bedpan which is great progress & will certainly help to keep the FMS (rectal catheter) from being inserted. He may have tried to inform the staff on the 2 other occasions that he may have needed to be placed on the bedpan while I was absent from his bedside. I'm glad that I can pretty much figure out what he's mouthing as many of the staff do not have any idea what he's trying to communicate. I will continue to insist that he be provided with the adaptive call light switch as dignity is an extremely important aspect of his recovery & everyone's!!!!!! Since his "reawakening" episode yesterday, I am not noticing the same amount of hand/arm or feet/leg shaking & tremoring that was previously present. I am so praying for him that with the current medications, he will be able to have improved hand/arm control, coordination, & dexterity to be able to use other adaptive methods of communication which would allow him to progress rather than regress. His BUN increased to 64 & potassium to 6.2 this morning most likely due to having been given the blood yesterday according to the nephrologist, so he underwent 3 hrs of dialysis this evening. The lung physician said his hemoglobin levels are still remaining low most likely because his kidneys are not secreting erythropoietin which is a hormone that increases the rate of production of red blood cells in response to falling levels of oxygen in the tissues. Overall, today was another progressive day of which to be thankful. The heart & lungs are doing great as he starts on week #8 post-transplant. If you would like to participate, family members have selected a novena to St. Therese of Lisieux on behalf of Perry. I would also like for you to include in your stated intentions the donor's family & friends who have been grieving their loved one for 8+ weeks. A novena is a devotion consisting of prayer for 9 successive days asking to obtain special graces. The practice of saying novenas is derived from Scripture. After Jesus's Ascension into heaven, He told his disciples to pray together in the upper room and devote themselves to constant prayer (Acts 1:14). Doctrine proposes that the Apostles, Blessed Virgin Mary, and other followers of Jesus prayed together for nine consecutive days, concluding in the descent of the Holy Spirit on Pentecost. Novenas are most commonly addressed to: Jesus, The Blessed Trinity or any individual person, The Blessed Virgin Mary, Saints, Angels (www.marypages.com) Dearest Saint Therese of Lisieux, you said that you would spend your time in heaven doing good on earth. Your trust in God was complete. Pray that He may increase my trust in His goodness and mercy as I ask for the following petitions (State your intentions) Pray for me that I, like you, may have great and innocent confidence in the loving promises of our God. Pray that I may live my life in union with God’s plan for me, and one day see the Face of God whom you loved so deeply. Saint Therese, you were faithful to God up until the moment of your death. Pray for me that I may be faithful to our loving God. May my life bring peace and love to the world through faithful endurance in love for God our Savior.
With Propofol titrated up to 15, Perry had a few episodes of restlessness & agitation during the night according to Rachael RN but did sleep for a few solid consecutive hours. Thank goodness Ryan notified me today that it was Week #1 of football, & I needed to download the NFL Sunday Ticket app on my iPad so that his father could be tuned into the 1:00 ET Bears vs the Packers game. Upon my arrival today, he had been taken off the EEG video surveillance. Summer RN had him pretty well confined in bed with extra pillows added along the lower portion of his bed to prolong his escape attempts as she was slowly weaning him off the Propofol & was down to 15 mcg/kg/min (6.1 mL/hr). Although he kept his eyes closed, he was able to respond to my questions with nods. He nodded "yes" that he wanted to listen to the Da Bears game🏈 - all huge "First Downs" compared to the last 4 days & previous lack of interest in the winning Cubs!!!!!!! He acknowledged that he was having pain related to the FMS (rectal catheter), that he was hot, & that he felt like he was running a fever. He was receiving a unit of blood for a hemoglobin of 6.1. His temperature was 37.3 C = 99.14 F which pre-transplant would be a fever for him for his normal baseline & heart rate in the 110s/minute. He was not converted to CPAP today to give his body a rest. With the Bears & the Cubs game losses today, it was probably good that he was no longer connected to the EEG. He was able to remain calm today with being weaned off the Propofol. Formula feeding rate was increased to 65 mL/hr without TPN infusion. Guaiac test for blood in stool was negative. Early part of day his abdomen was soft & non-distended. He began burping a lot ~435p, suddenly pale, & able to nod "yes" to being nauseated & having pain. He had lots of rumbling in his abdomen, so I comforted him with my hand warmth & gentle counterpressure & bent his legs so he could push against my chest. He was definitely STRONG with his pushes!!!!!!! So we did cold cloth to his forehead & leg pushes until pain subsided with anti-nausea medication given & his feeding turned off. He then began to mouth words & opened his eyes briefly. He then opened his eyes for longer periods & was able to answer that he was Perry & at the Cleveland Clinic. He mouthed, "I know why I'm sad" to which I provided him updates related to what was bringing him sadness. He then opened eyes to look at me & Summer & was able to track me as I moved to other side of his bed. He mouthed @ 510p that he wanted to call Sam but then quickly fell back to sleep. I called them on his next episode of alertness - he mouthed question but couldn't get it at the time. He rested calmly & quietly without fidgeting & escape movements most of the afternoon. He experienced intermittent abdominal pain with increased abdominal distension with the need to remove his FMS as it was not properly draining liquid stool. He then was doing well but started getting agitated with frequent fidgeting & leg escape attempts just before I was preparing to leave mouthing "Get me out of here" & began pushing me away. He was given Haldol IV & then began to rest & then sleep calmly without the Propofol being given at my departure.
Perry was able to get some additional rest from some of the extraneous movement for a majority of the night with the Propofol titrated up to 40 mg/hr. He was not able to respond to commands or open his eyes throughout the night & early AM, but thank God he was less actively agitated & much more @ rest with an occasional furrowed brow. According to Joanna, his day shift RN, the Drs have finally seemed to agree that Perry most likely has what is known as ICU Delirium even though he presented with the signs & symptoms much later than the average patient. I had continued to inform several of the Drs & nurses that Perry was exhibiting signs & symptoms over the last ~2 weeks & had requested an anti-depressant which can take up to 2 weeks to become therapeutic & it is why I will continue to request that he be provided with augmentative communication tools that will benefit his "total" well being despite such tools not being provided for patients who are long term in an acute care setting. For more information refer to: http://www.icudelirium.org/cognitive.html Joanna tried to find a "happy medium" for Perry this AM & afternoon as she titrated the Propofol downward from 40 mg/hr to 10 mg/hr with ordered Haldol 2 mg, Keppra 750 mg, Klonopin 1 mg, Seroquel 25 mg, & now Depakane 250 mg every 6 hours. He was not clenching down during his oral cleansing & suctioning today as he probably welcomed the moisture as his mouth gets so dry as he has constantly kept his mouth open to breathe especially on CPAP mode. He tolerated being on CPAP rather well today with good tidal volumes according to Bill RT. TPN continued @ 65 ml/hr throughout the day, & it was discontinued this evening to lessen the risks for Perry associated with giving him TPN. The formula continued @ 50 ml/hr. The NG tube was not reinserted today as his abdomen was soft & not too distended. His kidney function result for BUN went from 60 yesterday down to 38 today & creatinine dropped from 1.69 to 1.17 - which was great improvement with the dialysis & Lasix. As the day progressed, he was definitely more aware of his surroundings & located the end & edge of his bed & began to slant his body in that direction for his many attempts to make a great escape. He reminded me of the Chief from One Flew Over the Cuckoo's Nest & unfortunately I was Nurse Ratched trying to keep him safely contained. I'm thinking a new slogan for a t-shirt for Perry: "I survived J55!!!!" I took off his soft restraints to exercise his arms & legs to some good 'old Rock & Roll tunes on Pandora's Aerosmith Radio. He was responding by participating in some moves with increased tone @ intervals but kept his eyes closed. He eventually took ahold of my cell phone that I had purposefully placed on his chest to feel the vibration & beat of the music & moved it off his chest, pulled on his gown for it to be taken off, & drew his arm out of the sleeve & then scratched his chest incision. He briefly opened his eyes for Bill RT as I was giving a sweet lady several hugs & kisses when she sought me out in Perry's room to tell me that her husband had had a stroke & was bleeding. She was waiting for her daughters & granddaughter to arrive as she had made the decision to take him off life support. I walked her back to his room & comforted her some more & visited throughout the evening until her family arrived. We said the Lord's Prayer joining hands at her dear husband bedside. Rachael, his night shift RN titrated the Propofol up to 25 mg/hr to decrease his almost constant attempts to escape from his bed. He was able to nod a "yes" that I could go home to do laundry, & he briefly looked at me a couple of times tonight 😊- which were so uplifting!!!!! Soon after receiving his night medications he was beginning to calm, rest & sleep. So I'm sure you can guess why I'm still up....the never ending chore of laundry; however I'm rather enjoying the sounds of "home" & finding it rather comforting!!!