Perry once again remained awake until ~3a according to Erica RN with another uneventful night. His hemoglobin has remained in the 7.8-7.9 range during the last 2 days so no blood transfusions of late. He was started on CPAP on vent @ 7a & was able to tolerate it until 7p this evening.[...]
Erica RN informed me that Perry slept intermittently during night with an uneventful night otherwise. According to Jay RN, he was placed on CPAP in early morning & had worked hard during his PT session with Dean. He was able to complete his first set of double leg upward pushes on the Mini Shuttle Press & was rather exhausted shortly after PT. He was pale, & I was informed that his hemoglobin was 7.9 this morning. A Metabolic Cart test was started this morning in order to calculate Perry's energy expenditure & thus determine what his energy requirements are so that an appropriate amount of calories of nourishment are being given. Unfortunately his feeding was turned off during his PT session, & he was touched which is to be avoided during the test so the test will have to be restarted tomorrow. He has continued to remain on 55 mL/hr of Nestle Health Science IsoSource 1.5 calories/mL Calorically Dense Complete Formula Nutrition via his jejunostomy feeding tube. He was only able to do trach collar breathing on 35% oxygen today for ~20 minutes with increasing labored abdominal breathing resulting. Since he took in a lot of air into his stomach, he released several long burps & seemed uncomfortable with furrowed forehead & eyebrows after falling asleep almost immediately. Shortly afterward, he was transferred into chair & remained in the chair with varied positioning for ~3 1/2 hrs. I helped him to complete his hand/arm & feet/leg exercises while in chair & this evening as well. His R knee was noted to be swollen in comparison to L knee most likely related to his Rheumatoid Arthritis so some adjustments may be needed during his PT sessions. I asked for the night shift RN, Erica, to relay to this finding to the physician staff & to PT since his Rheumatoid Arthritis medications have not been resumed since transplanted relative to his anti-rejection medications. A foley cath was reinserted this evening so that very accurate urine output measurements can be obtained to determine if his kidneys are indeed improving as at times his true urine output had not been able to be accurate. All in all, a good day with the need to get restorative sleep. His Melatonin was increased to 9 mg from 6 mg last night so I am hoping he will be able to get a good night's rest as well as myself as he asked that I be there at 8a.[...]
Last night, Perry was awake until 3a & then slept soundly until 7a according to Todd RN otherwise an uneventful night. He has been experiencing nightmares so the Dr prescribed a higher dose of Melatonin to aid his sleeping. [...]
A few of God's words...
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.” Jeremiah 29:11-13 [...]
During the night, Perry awakened about every 2 hrs. He also experienced intermittent hot flashes with the need to disrobe interspersed with cold spells. Otherwise the night was uneventful. During the day, he was up in the chair breathing on his own off the vent on 35% oxygen via trach collar for 1 hr & remained up in chair fora total of 2 hrs. As he squeezed on my & Kim's hand, unexpectedly he raised himself away from back of chair to do his core abdominal exercises for about 2 minutes & then rested. Upon Kim's goodbye, he gave her a genuine smile & even a wink, & told her that he loved her. Before being returned to bed by the lift team, he did 2 more raises forward away from the back of the chair & held the upright position for 2-3 minutes each time. A well deserved nap was taken after Michael & I convinced him that the Bulls weren't going to be on TV. During the latter part of the evening he insisted on sitting up at the side of the bed with Michael, Todd RN, & me assisting him. We did our best to encourage him of the importance to not overdo it & again emphasizing that safety is a concern that although he has it in his mind that he can stand, his body is not yet capable. He tolerated sitting up for 15 minutes, & we know he would have gone for longer out of pure determination & will. Upon settling reluctantly back into bed, we watched the Cubs game & Jake Arrieta's no hitter. We tucked him into bed for the night with the request for us all to get a good night's rest & the reinforcement that he worked so very hard today. He requested my presence at 830a. We are all so very thankful for having had today & for God's unfolding plan for Perry. Thank you all for the prayers that are being said on his behalf for we continue to be witnessing his grace & love of this truly amazing man. Michael will be here on Monday in the event there is a discussion about transfer to a rehabilitation facility capable of accepting a vented patient.[...]
Denise confirmed being on the train & seated @ 323a. Perry had a fairly good night of rest with episodes of being hot & wanting to disrobe then cold according to his night shift RN Todd. When I arrived this morning ~1050, he was trying to take off his gown with complaint of being hot but it was also hot in the room so I turned thermostat down to ~72 degrees. He was extremely tired throughout most all of today. At noon, Joanna RN said she'd like to wait until 130p to get him up into the chair to allow him additional rest. By 1220p, Perry was mouthing that he wanted to be up in chair with the word "now" becoming a repetitive word. At 1235, Bill RT started Perry on 35% humidified oxygen via trach collar = being off the vent. Perry's oxygen saturations remained between 97-98% & he was able to tolerate being off the vent for 1/2 hour. While waiting for the 2 man lift team, I did my best to try to calm him & redirect his focus off of wanting to be up in the chair with a soothing Pandora Van Morrison station & brushing his hair. Eventually he took a nap as his body was working very hard & depleting his energy stores. He came off the trach collar & returned to ventilator before being moved into chair @ 105p. Perry was very quick to ask me to turn on the Cubs game. Brent, the chaplain visited, & he was updated on Perry's current medical concerns with the plans to begin discussion of a transfer to a rehabilitation facility on Monday. Before receiving a prayer, I of course asked Brent to ask God to assist the Cubbies to a win. Perry was able to mouth the Lord's Prayer in its entirety both today as well as yesterday. Passive range of motion (PROM) exercises were completed with a double goal in mind - to increase his strength & to redirect his focus off of his sore back & wanting to go back into bed since before 2p. With the significant importance & benefits related to breathing & his recovery, once again I did my best to comfort & encourage him while reinforcing the benefits of being upright in the chair. He was able to rid a lot of stomach air. His position in the chair was varied as much as possible in attempts to lessen his back discomfort. With the passage of more waiting time, Perry shook his head to express disappointment, so I said, "I might as well be saying 'blah, blah, blah, blah, blah'" to which he nodded in total agreement & mouthed, "I'm trying!" My reinforcement, Michael, arrived who was briefed on the situation. A few glances at the Cubs game occurred in between brief naps. Later rather than sooner, 305p arrived & he was returned back to bed by the lift team. Perry received an afternoon visit from a dear sweet RN & friend who used to care for Perry at Northwestern Memorial Hospital in Chicago in the Electrophysiology Department by performing interrogations on his implanted AICD. She was one of our "first signs" on our very first set of appointments to the Cleveland Clinic in October 2013 that it we were where we were "meant to be" when she was the nurse who called him in for his CT scan. They were both in shock for several hours on that day that our paths had crossed, & we all shed many tears of joy that day. During her visit today, she was able to see a "pink" Perry instead of a "dusky blue" Perry. Although he was asleep throughout most of her visit, she received a genuine smile from Perry when she confirmed that he was doing so very well & that she couldn't believe what she was seeing & all of the progress he has made according to all that she had been reading on the PostHope site & my texts to her along this journey. It was so sweet, loving, & comforting to watch her caress his hand during the whole visit & be so elated for him. For the remainder of the evening, he napped intermittently & also asked Michael & I several questions some of which included: "When can I eat?" "Why can't I eat?" "When can I wear clothes? "Why can't I wear clothes?" "When can I talk?".... He is experiencing a very hard time with remaining patient & that his body is weak & that almost all of our answers include that "it will take time" to get there. We continue to reinforce that it is so wonderful that he's already there in his mind & that he has been blessed with a miraculous recovery. We have all of you to thank for the many prayers being said & to God for answering those prayers. Please continue to remember to include the donor & the donor's family & friends in your prayers for they continue to be without their loved one & are suffering a deep & painful loss. For all of those who in our lives have come & gone, thank you for being a part of who we are today. And in the words of my late Grandpa Frosty, "Bless our association together!!!"
8/28 Per Cat RN's morning 635a update call, Perry slept well until 2a & was up until ~4a. His hemoglobin dropped to 6.8 & had pending lab results @ the time of her call. Kirsten RN called me @ 1014a as Perry had wanted to know where I was & when I was coming to see him. That of course made me smile. Upon my arrival, Perry was receiving dialysis with ~15 minutes remaining. A total of 1 1/2 liters of fluid was removed during dialysis. The nephrologist said he was going to continue with IV Lasix & was pleased with how the dialysis has been going as well as his urine output & his kidney lab results. He anticipates he will have dialysis on Monday & may be able to come off of dialysis sooner than later. Perry had been started on CPAP early in the morning as well. Three physical therapists then assisted him to sit up at the edge of his bed to begin to work on his core abdominal muscles with slow lateral then forward & backward leans. A few lower leg lifts were then completed & exhausted from dialysis & PT, he was returned to lying position & took a short nap. His NG tube slipped out during his PT session that had been helping to decompress his stomach & drain excess stomach acids. With intermittent burps, Perry seemed to tolerate being without it. Due to a hemoglobin of either 6.2 or 6.4, he received 2 units of red blood cells. His urinary catheter was removed later in the afternoon per his continued request. My sister & I had a meeting @ 4p with CVICU Nurse Managers John & Brent to discuss concerns & the end results will hopefully help Perry, other patients & family members. Michael & Kim arrived ~530p. Perry was up in the chair with an extra pillow seat cushion & a footstool to help relieve some additional tailbone strain & provide sensory input to his where his body ends & space begins. He managed to tolerate being in the chair until ~815p & then was returned to bed by his night shift RN Todd & Will RN. Perry requested to be turned to his L side. Finally, after 4 wks & 4 days, he was off of his back & quickly fell fast asleep. As of Monday, I will be speaking with the Social Worker to begin to make arrangements for him to be transferred to a Rehab facility. More details will follow as I learn more & the Drs begin to develop a plan. He may be able to come home sooner rather than later as rehab is now the primary focus & will be taking precedence over anti-rejection of transplanted organs as many of the drugs used to suppress the immune system are not going to be able to be given to him. Denise, Michael & I are at the Amtrak station waiting for the 154a train to arrive that will be returning my sister to Washington DC. She has been a huge blessing for the both of us. She is anxious for me to leave as soon as possible because she's concerned if I don't get to bed soon, I may not be at the hospital when Perry is expecting me & I will get another call asking where I am.[...]
Night shift update call from Cat RN was that Perry had gotten some rest with pain medication but had awakened @ 3a. He had tried to communicate to let her know that he wanted to have his TV turned on & after she figured it out, she obliged with his request. [...]