Perry had PT before I arrived & stood 3x for a few seconds with assistance & support. I saw Dean later in the afternoon & said Perry has had a very productive PT week. He gave me additional exercises for him (us) to do while he is on his side in bed to isolate & stretch the hip muscles as they are very tight & one of the reasons he's having trouble straightening up to stand tall.[...]
Perry awakened intermittently throughout the rest of the night with assistance needed for connecting him to the vent with disconnect alarms, position changes, & covering & uncovering him. I can always sense when he's looking over at me. Glad I could comfort him, reassure him, & meet his needs. The Nephrology team plans to check his labs in the AM to determine if he'll need dialysis tomorrow (Friday). They are going to increase his Lasix dosage starting today. They were informed of his continued complaint of feeling as though he's not being able to urinate although catheterized. Such may be occurring due to the pressure caused by the balloon of the urinary catheter, bladder spasms, &/or enlarged prostate. Unfortunately, he is not able to yet have the urinary catheter removed due to his hand tremors, lack of dexterity, & lack of hand/arm strength to utilize a urinal. Dr. McCurry (Cardiothoracic surgeon) soon rounded with Dr. Dar (Anesthesiologist Intensivist). A bladder scan will be done & medications may be ordered if he is having urine retention. Perry was shown X-rays of his lungs from last week & today which showed improvements of the atelectasis (partial collapse/deflation of lung's tiny air sacs known as alveoli in part of his lungs) relative to the pleural effusion (pressure caused by fluid buildup between his ribs & lungs). Atelectasis commonly occurs after surgery & anesthesia, presence of mucus plugs, prolonged bed rest, shallow breathing, respiratory weakness, & chest injuries...therefore all of the above in Perry's case. They would like to see Perry completing 2 hours of trach collar breathing at each attempt. It is not as if Perry is not trying, not wanting to attain that goal, or not "pushing" himself to work harder to attain that goal - he's giving it his all & doing the very best that he can. At times I get extremely frustrated because I feel as though Perry is being talked down to & that he's being told he needs to try harder as if he's not giving it his all. If they only "knew" him they would not be addressing him in such a manner because their approach & words are rather insulting not to mention there are so many other variables affecting the attainment of this goal. His abdomen continues to distend when he is undergoing trach collar breathing as he is a mouth breather so that increases pressure on his lungs...which increases the difficulty to trach collar breath... & so it goes. I inquired about his positive result for the Epstein Barr virus which was negative pre-transplant. He completed several reps of leg squats at different inclines on the Moveo during PT this morning. Dean said it was the best he's ever done so far!!!! We are starting to see some activation & a little bit of tone to his quads too. Tina, Dean's assistant, was telling me that she had given Perry some extra TLC during his PT session yesterday by giving him a lotioned back massage while he was sitting at the edge of his bed. Dean said, "She doesn't do that for just anyone, so you know he must be something special." Also Denise, the Nurse's Aide who typically gives Perry his bath, shaves him, trims his hair (including his ear/nose hair), & lotions his back, legs, & feet was a bit upset that his day shift RN, Ian, had completed his AM care. And then of course Ms Jackie fusses over him too!!! That "Smooth Perry!!" He was able to take a nap before tuning into the Cubs game ~1p. He was transferred into chair @ 125p & began trach collar breathing @ 130p. The Cubs game helped to distract at intervals when he wasn't trying to focus on breathing. He was able to complete 75 minutes worth. He again gave it his all & had to stopped due to abdominal discomfort & I could smell sourness from his stomach with each exhale. Exhausted he again almost immediately fell asleep as I put him in chair mode in his bed to try to help decompress his distended abdomen. His bladder scan was completed with a small amount of urine retention; however the scan was done several hours later after having the complaint. Dr. Udeh stopped in to see Perry & is trying to facilitate a plan for Perry to have a change of scenery for a short bit while he's on trach collar breathing on our anniversary as well as plan to allow him to talk for short intervals as he continues to progress & gain strength. The placement of a different trach was also discussed as the cuff on his current trach is beginning to leak more frequently. He continued to sleep intermittently into the evening. Our previous neighbors from J5-5 CVICU, Bob & Karla visited as he will be discharged to home tomorrow. We are wishing them well as they too have been given the gift of life!!!! Hard work ahead for them too!!! It was a successful & progressive Thursday & the start of a new month. Wishing you all the best as we all prepare to harvest & gather!!!! It was definitely the feel of a Fall day today here in Cleveland!!! Our love to all of you!!!![...]
Lora RN's night shift report was that it was an uneventful night for Perry. Due to an intense medical emergency/code on J5-5 lasting ~3 hours, I was not able to go back to be with Perry until around noon. The message that I was here & had been here since his requested time was relayed by the chaplain, Brent, as Perry becomes very anxious if I'm even a couple of minutes late. It is extremely hard waiting & wondering when you're in the waiting room with all of the tears shed by family & friends. And it's so sad when a person dies without a loved one nearby. I recognized that the unit's housekeeper, Jackie, who says it is her calling "to clean & pray, that's what I do, just clean & pray" needed a big hug when I finally got to come back. She helps me count my blessings, prays for "Mr. Perry" & me, & is as sweet as can be & has been a constant for me & Perry with smiles & some laughter too. She stood beside me on 8/5 & prayed when there wasn't much more that I could do other than to pray.... after Perry's eyes gave me a final "I love you" before his pupils went pinpoint, his hand grip went limp, & he became unconscious. She does A LOT of cleaning & praying here!!!!! And for those who need to know that they are loved in their final moments, she's on the sidelines praying for them to feel love, comfort, & peace as they depart to a place of true healing!!!!! I reached out to one of the dear ladies I met whose sweetheart lost his battle here a few weeks ago. On Friday another couple of friends who were our next door neighbors in J5-5 will be departing for their home as he's progressing well after his lung transplant. He had said to me that Perry had told him, "Man, we've got to get out of here!!!!!!" I didn't tell his wife until after her husband was transferred out of the unit that he was in the same room that Perry had his complications in & that 2 other persons had died in the day & night before Perry had been transferred to Room 7. I could not dispel that Perry had not said to him, "Man we've got to get out of here!!!!!!" Dean PT had been able to accomplish a very extensive 1 hour session with Perry according to his day shift RN, Audra. He felt much more at ease soon after I comforted him & was able to take a nap. He was transferred to chair at his bedside by lift team @ ~140p & began trach collar breathing starting @ 150p. He was ready to give up by 240p but due to another medical emergency/code called in the room next to us, I needed to do a lot of comforting & convincing that he was doing great, which he really was, until his RT was able to be with him. The doctor was elated to know that he held on & was able to manage the 1 hour goal that he wanted him to do. He fell asleep immediately after going back onto the vent. He also was able to tolerate being up in the chair for much longer with the gel seat cushion & step stool that I purchased as well as attaining a much better posture adding all of the extra supports. His OT session was held as Perry was too tired to be able to participate. Dr. Udeh stopped by to see Perry in the early evening. Perry asked when he might be able to attempt to speak again. Dr. Udeh suggested that perhaps if he can continue to manage trach collar breathing as well as he has been doing by striving for a little bit longer each day that maybe by our anniversary he could venture out of his room for a short bit & also attempt using the Passy Muir Valve. He plans to talk with the team of Drs to help facilitate the progression of the use of the Passy Muir & at the same time is also helping Perry to set goals as an athlete would. He's a great encourager & is a true bedside physician for Team Perry!!!! We got to hear from Char & Sam this evening & learned that they are both doing pretty well which put our minds at ease. He tuned in for a portion of tonight's Cub game before falling asleep. He began to arouse shortly after the game & was becoming rather fidgety. He asked for me to stay. Lora RN took over his care from Melissa RN @ 11p. He had remained asleep & still until just a few minutes ago (150a) & when I asked if it was okay for me to go he nodded "no" & he's had a furrowed brow intermittently, so I'll be staying right here with him. He also then whispered "cold" with enough breath that although without a voice, the word was definitely heard so I asked him to repeat it & the same thing happened. A change. I do not hear an air leak from around his trach & alerted Lora. 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![...]
Tuesday, September 29, 2015 Jenna RN (assigned from another ICU) called with the good news that Perry had slept well & had an uneventful night. His hemoglobin today is 7.6 & hematocrit is 23.2. He is to undergo dialysis later today. His PT session with Dean was finishing up upon my arrival with a great report given that he had worked very hard & stood up x 1 with assistance for a few seconds. He was very tired & napped afterward. Starting at 1212p, he was able to tolerate 35 minutes of trach collar breathing with much encouragement needed, ice cold forehead washcloths, hand holding & massage. Dialysis was from 130p-530p for fluid removal & cleansing his blood with BUN 76, Creatinine 2.82, & GFR 23. He slept intermittently during his treatment. When awake, he expressed multiple times that he wanted me to turn on the Cubs game, so almost every hour I had to reinforce that the game did not start until 710p. I am so hoping that he has turned a corner & that it will not be too long that he will want to listen to music too!!!! Kat RN took over his care @ 345p. She truly enjoys getting to take care of him & even when she is not assigned to him, she comes to see him just to say "Hi" & see how he's doing. He required a medication called Cathflo during dialysis as his catheter flow was becoming more & more sluggish. His abdomen has remained softly distended throughout the day with a little more consistency to his stools & able to get rid of lots of burps with chair mode positioning. He has not experienced nausea for several days so able to avoid Reglan for now...making some progress. The weather was overcast & rainy here in Cleveland & so it was in Cincinnati too causing a rain delay for tonight's game. He held in there until ~830p with high hopes since 2p to watch the Cubs play, but the rain continued to fall..... & he was "out" for the night after having such a very long & productive day!!![...]
Monday, September 28, 2015 Peter, his night shift RN, said he slept fairly well throughout the night & that he had a few "communication bumps" trying to figure out what Perry wanted to convey but that Perry was very patient with him. His hemoglobin this morning was 6.8. I was told the doctor did not want to transfuse him. Upon my arrival, his day shift RN Audra informed me that Perry did receive a unit of blood this morning. At the time of Peter's call, it had not yet been determined if he was going to have dialysis. He was put onto Tuesday's schedule for dialysis so the blood was given. He was in chair mode & Denise was completing his morning care. His formula feedings were increased to 60 mL/hr. The Nutritionist visited & after reviewing his most recent Metabolic Cart results & based upon 60 mL/hr, he is getting 300 kcal/day too much. His feeding pump gets turned off during PT activities, increasing abdominal distention, episodes of nausea, when he needs to be cleansed, moved up &/or repositioned in bed, & with the administration of medications. Needless to say, due to all of the above, his formula feeding rate is still 60 mL/hr to allow for some of the difference he’s actually not receiving in 24 hours. With it being Monday, a new set of physicians take over on all of his speciality services, oh boy!!! After I discussed what can be done regarding the continuation of his low hemoglobin levels, it was decided that the Nephrology team will be consulted as to whether or not Erythropoietin will be ordered & given weekly to stimulate Perry's bone marrow to produce red blood cells thereby increasing hemoglobin thus facilitating the delivery of oxygen to his tissues. If you recall, erythropoietin is a hormone that is secreted by the kidneys & with Perry’s kidneys still in a state of confusion, hopefully the need for transfusions can be lessened. The Nephrology team was consulted, & they agreed with starting Erythropoietin today. The scheduled daily dose of Reglan was held per my request as Perry has continued to have loose stools. Colace (stool softener) has not always been held despite all of the loose, watery stools & the continuation of other bowel regimen medications. Finally, Colace has been discontinued as I certainly don’t want him to have to have another FMS (Fecal Management System) placed. Perry was able to tolerate 20 minutes of trach collar breathing @ 1210. During his OT session with Rob & Kim, he was dangled & assisted to a standing position on 4 separate occasions with the use of gait belt strapped to both Perry & Rob & support assistance by both therapist. Perry stood for ~1 minute on his last stand with their continued assisted support. Exhausted from PT, he took a long nap. Dr. Udeh (my “go to physician”) has been very faithful & has continued to check in on Perry via cell phone &/or visits. He tolerated being up in chair mode on 2 additional occasions this evening. He had been asking to watch the Cubs game since 2p today & was watching the clock very closely until the game time!!!! At the end of the game, I whispered "Cubs win, Cubs win!!!!!!" as he had fallen asleep shortly after 9p.
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.