Chad RN's night shift report was that Perry had remained unresponsive to commands & that he slept fairly decent with a few fidgety/feisty episodes for which soft restraints were applied for his safety & further sedated. He had dialysis this morning as his BUN (blood urea nitrogen) had significantly increased. His WBC count remained @ 8. His formula rate was increased to 40 mL/hr & IV TPN remained @ 65 mL/hr. Propofol 12.2 mL/hr (30 mcg/kg/min). Nothing of concern on the CT of his brain, abdomen & pelvis was relayed to me. He remained unresponsive to verbal commands throughout the day. It was decided that perhaps the Baclofen given for the myoclonus (spasticity twitching/jerking movements) may be contributing to his change in mental status, so this evening it was ordered to discontinue the Baclofen & discontinue the Propofol, increase Klonopin from 0.5 mg to 1 mg twice a day, continue Keppra 750 mg twice a day, start IV Valproate sodium 1000 mg (Depacon) & then give Depakote 500 mg twice a day. Around 5p, Perry began to have another fidgety/feisty episode during which he attempted to pull out his trach becoming disconnected from the vent so soft restraints had to be applied. He continued to be in nearly constant side to back to side motion with discomfort & agitation, drawing his legs up frequently as well as placing them over the side of the bed, pushing me away several times all the while remaining non-responsive to verbal commands & keeping his eyes closed. Despite soft restraints, his continuous movements & exhibited strength to pull away & push back led to several attempts to remove his trach, NG, & other catheters. As a result, the Propofol was continued with the need for a couple of boluses until Perry eventually settled down around 1030p. He ended up with Propofol getting bumped up to 16.2 mL/hr = 40 mcg/kg/min until he was finally out for the count with the loss of the NG tube in what seemed a good 15 round fight. After all, he is my Italian Stallion!!! Lots of things were on my mind & heart throughout 09/11/2015 - our need for God to be at the center of each of our lives, Perry of course, myself, our sons & future daughter-in-law(s) & hopefully someday grandchildren that will need Perry in their lives, Perry's parents & brothers & their families, my parents who celebrated their 58th wedding anniversary, the victims & their families & friends of 09/11/2001, the service men & women of the USA of past, present & future as well as their families & friends, Perry's donor & his family & friends, our families & friends, Perry's physicians & nursing & ancillary staff, my patient & her family & friends, the many patients & families & friends who have come & gone over the last 47 days in the CVICU, the patient & family & friends for whom the Purple Heart was displayed in the ICU, the many friends & acquaintances that I have made on J-82 & in J5-5 CVICU, & the dear lady I'd been trying to get to come stay with me during the last 2 weeks whose husband returned back to the ICU this evening after having coded & helping to console her as she contacted their sons to tell them that the "Good Lord didn't take him today!!!"
According to Chad RN’s morning call , Perry slept fairly decent during the night with fidgeting on occasion for which he received medication to calm him. His WBC count was @ 8 & a 6 yesterday. Hydralazine IV was given to lower his BP. Soft restraints remained on throughout the night. His day shift RN, Hannah, informed me that Perry had squeezed her hand & briefly opened his eyes during her early AM assessment. The last Blake chest tube was removed with a scant to a moderate amount of serous drainage seeping from the site. She removed his leg soft restraints as he had remained quiet. Upon my arrival, he was starting to have a scant amount of clear bloody drainage from his NG tube & a ~250 mL combination of green bile & coffee ground gastric secretions were in the suction cannister. He remains on TPN IV @ 65 mL/hr & formula via jejunostomy @ 20 mL/hr for nutrition. Since I was with him & he had remained still, his arm soft restraints were able to come off. He did not open his eyes or squeeze my hands per command today. I did however feel slight increased tone kick in for a few seconds as I provided passive range of motion during shoulder exercises. His urine output has been of a decent amount & pale light yellow with IV Lasix being administered. He was taken for a brain, abdominal & pelvic CT scan @ 2p. It was his first time out of the CVICU since 8/5. Hannah RN informed me that when the plate was placed beneath him for the CT he suddenly opened both of his eyes wide & was a little jittery for a short bit. RT informed me that another Metabolic Cart has been ordered, & he will be completing that tomorrow to determine his nutritional needs based on his energy requirements. He has not had any breathing challenges while he has remained in this state. At 4p, Perry did briefly squeeze Hannah’s hands & very subtly moved his feet per command while keeping his eyes closed. He briefly raised his L arm upward & back down otherwise he had remained asleep without movement until ~620p. From 620p until ~7p, Perry began attempts to move purposefully & frequently from side to side & arching backward when on his back with facial redness & facial strain as if he were crying with writhing pain. He drew his arm/hand to his forehead several times as he does when he tries to self-comfort long before transplant. He received Vicodin & Dr. Adi (Intensivist) was at his bedside witnessing part of his discomfort after Hannah had paged him to come. I provided Dr. Adi with an update of the significant changes in Perry's condition since last Friday & his complete lack of interest in music, favorite TV programs & movies, the Cubbies, etc. He ordered a dose of IV Fentanyl without much relief & then Propofol to relieve the discomfort & sedate him @ which immediately took effect. No gallstones or kidney stones were seen on the previous CT scan. Dr. Adi is also going to order a psych consult relative to the signs of depression which Perry had been exhibiting prior to this change in mental status as it is not unusual for ICU depression/psychosis to occur after such a long stay & as we've come too far for Perry to give up. I am thankful that Dr. Adi listens & is pro-active for a more favorable outcome. Please continue prayers that the causes of these changes & discomforts can be identified & overcome. And that God, Jesus, & the Holy Spirit heal, protect, guard, guide, comfort & uplift this man named Perry Joseph Paul DiGiovanni!!!!!! And that they continue to show the doctors & nurses the Way as they try to figure out how to best care for this man we all dearly love!!!! Are you ready for some Football🏈???!!!???!!!! Come on TEAM PERRY!!!!!!
Indu RN reported that Perry was restless with agitation/frustration during the night but denying pain with brief nods as he kept his eyes closed. She continued with ointment to rash & Benadryl without much relief. Fentanyl was given this morning in attempts to relax him. Another abdominal KUB X-ray was taken this morning due to continued distention & watery stool drainage from the fecal management system. It was decided that a NG tube would be passed to rid air & gastric secretions. Nourishment with TPN continued, & he was also started back on formula @ 20 mL/hr. Upon my arrival this morning, Perry was asleep without responsiveness to my voice but Summer RN said he had been able to follow commands & nod to questions in early AM. He was being hooked up for another video surveillance EEG. Neurology did not contact me at any time today. He has continued being given Baclofen 10 mg for the twitching/jerks which he does not typically have in a sleep state. He did not have any breathing challenges today as he slept the entire day opening his eyes for only a brief second to my voice in the afternoon. He still has the one Blake chest tube in but is able to sleep on his side appearing comfortable when at rest. During his PT session, Perry was at times participating with activating some of the leg movements. Dean, Tina & I were able to sit him upright at the edge of his bed for ~10 minutes which he seemed to tolerate fairly well but kept his eyes closed & appeared to be asleep with an occasional self movement of his head & shoulders. He had a furrowed brow throughout most of the day. The NG tube was passed @ 3p with lots of air & green bile drainage. Nephrology did not need to dialyze him today as he was making sufficient amounts of urine & his labs were stable. He currently has no edema (swelling) to any of his extremities so his hands, arms, & legs are very frail in their actual "true" state with further muscle atrophy even more apparent. My family had recommended that I go to the weekday yoga session for transplant patients & their family members & possibly go see the movie, War Room, with Karla the wife of Bob who next to Perry's room. Since I needed to get groceries, she & I went to Costco in Strongsville OH & then to the 7p showing. We both needed to get away & cry at the movies - plus treat ourselves with some really good theater popcorn & pop. The movie was good for the both of us, & we were ready to go back to the battleground of the J5-5 CVICU to tell the devil to go back to Hell where he belongs because Jesus Christ is the Master in our husbands' rooms & lives. Chad RN had said that he was glad I was coming to visit as he was just getting ready to call me. Perry had been very restless once again, pulled out his NG tube partially & attempted to pull out his trach, arterial line, & urinary & rectal catheters so he had to be placed in soft restraints to protect him & prevent him from causing harm. He had to be given Haldol to also calm him down. He was not responsive to commands or my voice. I declared out loud several times that we weren't going to take any more crap (well I did say another word too) from the devil, & he was to go back to Hell where he belongs because Jesus Christ is the Master in Perry's CVICU room & our lives!!!! Go God Go!!!!! We have established a designated fund (“Perry’s Transplant Fund”) for those of you wishing to provide financial assistance to cover Perry’s enormous and mounting medical, housing and rehabilitation expenses. We appreciate everyone’s concern and generosity in this time of great need. Any amount that you can give would be a huge support for Perry and his family. Every little bit helps! You can make credit card donations on the "Donations" tab above. Checks can be made payable to “Perry’s Transplant Fund” and can be sent to the following address : Perry's Transplant Fund c/o Nick J. DiGiovanni 22050 Coriander Lane Frankfort, IL 60423 Thank you all again for your prayers and continued support to this point and all future well wishes to come. Perry and his entire family truly have a tremendous support group!
Indu RN's morning call indicated Perry slept for only a couple of hours in spurts throughout the night otherwise uneventful. This morning he completed 30 minutes of trach collar breathing on 35% oxygen. Bill RT held off on CPAP today to conserve Perry's energy. He had planned to repeat trach collar breathing later in the day but that did not happen as Perry's body needed rest. His heart rate which has been in the 100's for a couple of days was back in the 80's-low 90's today. I am very excited to share today's good news - his stool culture came back negative for C. difficile!!!! A sample was sent late this afternoon for a guaiac fecal occult blood test - results still pending when I left. His feeding was once again stopped early this morning to rest his gut as he has continued to have liquid stools & his abdomen was once again distended to ~10 months pregnant size. The Drs all agree that for now that since he is in need of fuel, he should be started on Total Parenteral Nutrition (TPN) which is nourishment by IV. Prior to his jejunostomy, they did NOT want to start TPN because it is very high in glucose (sugar) & the IV solution would be a great breeding source for yeast & thus another systemic yeast infection which could be fatal. Since today was day #35 of IV anti-fungal (anti-yeast) medication, they feel the TPN is safe to give temporarily. TPN started @ 10p. Another unit of blood was also given this evening for low hemoglobin & hematocrit. He aroused only twice today while I was there but kept his eyes closed each time with ~45 minute episodes of extreme squirming & attempts to remove the most "undesirable" of catheters. It was difficult for 3 of us to keep him contained in the chair & the bed. The culprits: a terrible rash related to acidic liquid stool seepage despite the fecal management system (FMS) & of course the FMS itself. With cleansing, ointment, air exposure, IV Benadryl, & time, he eventually settled down. Although so hard to see him in such discomfort, it was a good thing as he was able to turn himself side to side, strengthen his core muscles, lift his legs, push & pull against us with a great show of strength. Neurology did not consult today which was also perhaps a good thing as the jerks/twitches subside when sleeping.
Chad RN's morning report indicated a restless night partially due to diarrhea every hour & toward later morning 3 times/hour. As a result, a culture for Clostridium difficile (C. diff) was taken. Prolonged use of antibiotics increases the risk of acquiring this disease which causes inflammation of the colon. Antibiotics can destroy healthy bacteria normally found in the gut that are there to protect us against infection. C. difficile spores can then flourish in feces. Surfaces contaminated by feces can then transmit the infection. Healthcare workers can also spread the bacteria to other patients or contaminate surfaces via hand contact. Due to his already decreased auto-immune system related to his Rheumatoid Arthritis & all of the anti-rejection medications that lower his immune system even further, please pray that he dodges this potential risk. A temporary fecal management system (liquid stool containment device) was placed this morning to help lessen the need to be cleaned rather continuously, prevent skin breakdown, lessen the spread of infection, conserve his energy & increase his ability to get rest. His formula feeding which had been held since Friday night was resumed this AM at 20 mL/hr (previously @ 65 mL/hr). He was started on Baclofen 10 mg this AM for the myoclonus (continuous total body jerking & twitches) & Neurology is to see him tomorrow. He slept almost the entire day today. When he's awake the twitches/jerks are present & a significant increase occurs with frustration as well. Since his tongue is also affected with tremors, it makes trying to figure out what he's trying to communicate that much more difficult which then leads to a vicious & exhausting cycle. Rheumatology Dr. was in this morning & she will start him back on medication, Plaquenil if he begins to have inflamed & painful joints. She does not want to resume him on the medication Arava due to the risks outweighing the benefits. Many of the anti-rejection medications will help treat his Rheumatoid Arthritis. No PT by Dean today as he was called out to complete a discharge. Perry was able to tolerate 30 minutes on trach collar @ noon. He was started on dialysis @ 1650 for 3 hrs & continued to sleep through most of the treatment. He was settled in for the night & starting to sleep soundly by 9p. It was a definite Labor Day for him & me during his awakened states. Hoping everyone was able to enjoy the holiday & got a day of rest & relaxation.
With Chad RN's AM call, I was informed Perry had slept for ~30 minutes after Ry & I left & continued to sleep for short intervals the remainder of the night. He did not have any additional episodes of nausea or dry heaves. His body twitching/jerks were less prominent when he slept. Upon our arrival today (Sunday), Perry was sitting up in the chair. Nathan RN shared that he had had a good morning except for the continued total body twitching & jerking motions. It was decided to hold his formula feedings until tomorrow (Monday) to allow his stomach a chance to rest relative to Saturday's nausea & dry heaving episodes. His nephrology Dr. planned to continue with Lasix IV today & scheduled dialysis on Monday. The lung transplant Dr. had no additional changes in his orders. Much to my dismay, Neurology plans to see him on Tuesday relative to Friday's requested consult. Denise, his Nurse's Aide, came in specifically to tell me that she & Perry had some fun as they listened to some R&B music while she cleaned him up & shaved him during the morning. She originally thought Perry was trying to tell her something & then she realized he was mouthing the words to the Stevie Wonder song that was on. They continued to sing/mouth along to other songs, & she was so thrilled to see him smiling & having fun. What great & joyous news for a Sunday!!!!! I also gave her great praise as she had also trimmed his nose hairs & had gotten all the unshaven hair that had been left beneath his nose for the last week or so. He was starting to remind me of Dave from the original "Alvin & the Chipmunks" with those whiskers! Perry was able to tolerate trach collar breathing for 1 hr & 5 minutes today without such abdominal labored breathing. Matt, his RT assisted him to talk with Perry being able to say his full name & also saying hello to Ryan DiGiovanni. He made it through the day without further nausea or dry heaves. I made a FaceTime call to Michael as both Ry & I were experiencing great difficulty trying to figure out what he was so very adamant about trying to communicate. After about 15-20 minutes, we finally figured it out. I also made FaceTime calls to my father & my (our) brother-in-law to wish them both a happy birthday with Perry doing his very best to keep his eyes open & mouth "Happy Birthday" & hi to all of my (our) family. Goodbyes were said to Ry which of course was hard as he must settle into serious academic studies for his 2nd year of PharmD school & a long stretch ahead between his next visit, but so happy we have FaceTime capability. He tolerated being up in the chair for ~7 hrs today which also was huge progress. Shortly upon return to bed & being positioned on his L side & covered with 2 warm blankets, he fell soundly asleep. A subtle nod was given when I kissed him goodnight & wished him good dreams. A very special "Thank You" to all of you & for what you each mean to us!!! For all of the prayers, cards, donations, gift cards, calls, text messages, emails, photos, volunteered time, acts of kindness, gifted talents, passionate healthcare providers that have made a huge impact in Perry's life, friendships & bonds, & all the ongoing unconditional love & support. This life can be so hard for all of us with the many trials & tribulations we must each face. Some of you have heard me say, "We are all in the same boat no matter what, but we are each rowing with different oars & through different currents at different times in our lives!" Wear/cling on to the life jacket given freely to each of us, be on the lookout for the beacon of Light through the the darkest & stormiest times, & always, always, always appreciate with childlike wonder & awe EVERY rainbow you ever encounter because He sees us through every storm. And how wonderful & beautiful it is when you get a chance to appreciate a double or triple rainbow. What a great promise that He loves us!!!!!! Hebrews 11:7 Can't wait until we can go fishing again Perry. I will have to hook all the worms because of the transplant unless we are trying to catch Old Walter in that case hot dogs will do just fine!!!!
Todd RN's AM report was that Perry slept for a good solid 7 hr stretch without budging & his twitching had calmed. He had a hard day today (Saturday) related to continuous total body jerking twitches which lasted all day long without a Neurology consult again today. Nausea with dry heaves @ 115p medicated with Zofran IV without relief & then a dose of Reglan IV which was later effective with return to bed, warm blankets & a nap. Another KUB X-ray was repeated with his stomach appearing of more normal shape & less air than previous KUB. Intermittent bladder spasms most likely related to the continuous abdominal twitching. Frequent back pain due to his rheumatoid arthritis, positioning, & of course aggravated by the body twitching & jerks. Needless to say he was frustrated & annoyed without getting any relief from the twitching. He has been very down & showing no interest or desire to watch the Cubs, the Bears, listen to his favorite music or watching his favorite TV shows or movies for a few days. He answered 1985 for the year several times this evening & at times repeating the same phrases, but I feel such are related to ICU environment & alarm/noise pollution & motor/sensory overstimulation. He is as able to follow commands & his basic neuro assessment is otherwise fine. Ryan arrived @ ~9p which brought a smile. RT assisted him to talk with cuff deflation. He was able to talk for the longest time so far. He said "Nobody else until" repeatedly. He was requesting that nobody else visit until he is able to talk. From ~930p-midnight he had another initial bout of nausea followed by intermittent dry heaves & inability to get comfortable. He was given IV anti-nausea medication, & with continued discomfort the ICU anesthesia Dr. consulted. Eventually Perry was able to describe his discomfort as that of a gag feeling & most likely referred shoulder pain from irritation of the diaphragm. The Dr. ordered for a medication spray to numb the back of his throat to alleviate the gag sensation. With encouragement & exhaustion, Perry relaxed was repositioned, & warm blankets applied & began to drift off to sleep.
Todd RN called & informed me that Perry did have several toss & turns as well as hot/cold spells throughout the night otherwise it was another uneventful night. Jason RN & Jenn RN (orientee) were assigned to Perry on day shift. I arrived at 740a & greeted with an "I love you!" He then slept intermittently. At 0958, Perry was able to rid a huge amount of thick whitish cream mucous with trach cuff deflation & weak cough. Bill RT then allowed him to say a few words on 2 different occasions. He repeated Nick’s name several times on the first try & said "I love you" on his 2nd try. I got his first try on video but not his 2nd due to having used all my phone storage. He was placed on trach collar breathing which was a lot of work back to back within a very short period of time. He became sweaty & was not able to tolerate trach collar breathing but about 30 minutes due to increased labored abdominal breathing, nasal flaring & oxygen saturation decrease to 86%. He was totally exhausted & slept for about 4 hrs straight. Dr. Valapour visited & plans to keep his Prograf dosage the same today as the Prograf lab values for several of the patients were all rather odd today so she will make adjustments based upon lab values tomorrow. She planned to also follow up with Neurology as his twitching this morning was significantly increased & continued to be more significant throughout all of today. The Nephrology Dr was pleased with his dialysis results from yesterday but anticipates that Perry will need to continue on intermittent dialysis for a bit longer timeframe. He plans to give Perry Lasix IV & see if he is able to wait & undergo dialysis on Monday. Dr. McCurry (Cardiothoracic surgeon) was in & pleased with his progression & trying to emphasize Perry that each day he's making progress. A swallow study was inquired about with Dr. McCurry by the RT & an order for such was written. Caution to avoid an aspiration & thus a potential lung pneumonia are serious risks. If he passes the basic swallow study, Dr. McCurry plans to allow for very small quantities of ice chips to be given. Dean came in for PT session @ 1015 but Perry was in a deep sleep so rescheduled @ 1130, & then again @ 1p as Perry continued to sleep soundly. He did well during his session which ended & 115p with an assisted pivot into the chair by Dean with Jenn RN & me helping as well. A nap was again immediate. Kimberly OT saw Perry for upper extremity range of motion exercises & reaching exercises with his L arm/hand & then @ 320p Lauren, the Speech Therapist, was in to see Perry to complete a preliminary swallow study. He was able to demonstrate mouth & tongue movements used in swallowing. Green food coloring ice chips & water via spoon & then by straw were given as well as green food colors vanilla pudding to assess if his oral intake is ending up down his airway (trachea) & into his lungs. Upon completion the trach cuff is deflated & trachea suctioned - because Perry has been getting rid of huge amounts of mucous with cuff deflation he had green stained mucous but once the cuff was reinflated & trach suctioned there was no green food colored secretions so it was determined that he passed the preliminary study. He will undergo a more thorough barium swallow study also known as a videofluoroscopic swallowing study, or VFSS at a later date. More rest followed & @ 420p, he was lifted back into bed. His abdomen remained very distended but he was having frequent releases of gas so the NG tube was not passed today. His formula mL/hr was increased to 65 mL/hr relative to the results of the Metabolic Cart. Unfortunately Perry had increased body twitching the entire day, so he was very frustrated & was experiencing bladder spasms, so he required lots of TLC today & this evening. He eventually settled down with warm heat packs with weight of a 500 mL IV bag, abdominal massage, & being allowed to vent his frustrations & hitting a lap pillow. He made it through it, exhausted & back to sleep by 10p. Tomorrow will be another day! And we are both looking forward to Ryan coming to see us! Wishing everyone a safe & fulfilling Labor Day weekend!
His night shift RN Tracy informed me that Perry slept fairly well during most of the night awakening intermittently for brief intervals & was up for the day around 430a. He will have dialysis today as his BUN, creatinine, & potassium are elevated. His abdominal distention increased further during the night so another abdominal KUB X-ray was taken with mostly air seen. His abdomen is about the size of an 9 month pregnancy for a comparison, so unfortunately it makes breathing significantly harder for him, depletes his energy, & decreases the timeframe he is able to tolerate being off the vent. Another KUB X-ray will be repeated Friday morning & if the air has increased or stays the same, an NG (nasogastric) tube will have to be placed to help release the air. I slept in a little bit later this morning for some much needed rest, so prior to my arrival the Metabolic Cart & his PT & OT (Occupational Therapy) session were completed. The Occupational Therapist saw me making coffee in the lounge area before heading to his room, & she agreed that we should be trying to get him to reach for & place objects in my hand to try to help develop his hand & eye coordination & target accuracy. His bed was converted into a chair instead of being moved to the bedside chair upon completion of PT in order to conserve energy for dialysis. He was able to tolerate trach collar breathing for ~45 minutes in early afternoon. I worked with Perry on reaching for a baseball & then a foam block for about 20 minutes which was extremely hard work for him requiring much focus, concentration, energy, & lots of praise & encouragement to keep trying. Nick & Michael called & gave even more encouragement. I was able to read to him many of the cards he has received & showed him pictures posted by his beloved coworkers on PostHope too which brought both smiles & a few tears too. I am anxious to get to read posted comments to him & see all that I have missed too as we both gain energy & few free moments together. He mouthed several times to me today, "When will I get to say 'I love you?' " which melted my heart. The RT said he will try to give him the opportunity to speak a few words tomorrow if he was doing well enough tomorrow. Needing to lift his spirits with that answer, I told him in the meantime that he could tell me "I love you" with his eyes - which at least brought a smile out. His dialysis was for 3½ hours ending at 630p followed by an evening bath. He then received a FaceTime call from Jim & sister-in-law Diane. By 8p, he was ready to go to sleep, & he told me to go get some sleep too so that I could be there at 730a. It's been a long day.[...]