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Posted 2015-08-31T05:10:00Z

August 30, 2015 Getting Better Every Day

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.[...]

Posted 2015-08-30T05:11:54Z

August 29, 2015 - "Why & When?"

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!!!"

Posted 2015-08-29T05:55:00Z

August 28, 2015 - TGIF

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.[...]

Posted 2015-08-26T03:47:00Z

August 25, 2015 Post Surgical Post

Perry's surgery went well, & we were able to return to his room about 530p. He has been resting comfortably with IV pain medication given twice so far. Denise & I are going to be leaving soon so that we may return bright & early tomorrow morning!!! He's been made aware that the Cubs are up 6-0 @ the bottom of the 6th inning!![...]

Posted 2015-08-25T19:35:00Z

August 25, 2015 Off to the OR

Becky RN called with update that Perry slept well, had a few stools (much needed before next surgery), & had requested if he could have an ice chip so she was going inquire with his Dr. for the order. I received call @ 957a as getting ready to come & see my Prince that there was a cancellation on today's surgery schedule, & so my consent was given for him to have jejunostomy surgery this afternoon. Upon my arrival, I learned that another chest tube had been removed this morning, so even more progression as now down to 2 Blakes which will increase his comfort with positioning in bed & when in chair as well as his mobility. He's been extremely depressed ("extremely" is not even the right degree of measure), has been confused as to time & place intermittently, & he has remained oriented to self. & this morning when I asked him who I was & what my name was he answered, "Misty Barker." He repeatedly knew that his sons were Michael & Ryan but was not able to tell me his brothers' names. When I showed him Doreen's picture & I asked what his mom's name was he said "Mommy" & eventually he said Doreen Massetti. The Pulmonologist was at his bedside at the time & we agreed the present difficulties most likely are brain processing delays due to lack of sleep, food, energy & ICU sensory overload. Later in the morning, we were able to FaceTime with Nick, Sam & Char & he recognized them, mouthed who they were & "I love you" to each of them & also drew his hand up to wave with assistance. He has been sleeping well this morning & afternoon, arousing briefly with attempts to move his legs, arms & trying to turn himself. Wanting to know the time for his surgery. Once he's able to receive much needed nourishment, he will be progressing. We got a mirror yesterday so I can tip it so he can see the blue sky which in time will help too to be connected to the outside world. Many are asking - I am doing very well. We (Denise & I) were able to get 9 hrs of sleep last night. I'm eating, maybe not on time, but at least eating healthy, showering daily, & I even shaved my legs yesterday too!!!! Went to yoga class yesterday offered for pts & family members of transplant pts which I had not been able to go to for the last 3 wks. He was taken down to surgery ~310p & it will be ~2-4 hours. I got to see him & send him off with a kiss this time around. Will anxiously be awaiting his return.[...]

Posted 2015-08-25T04:01:00Z

August 24, 2015 This Is the Day the Lord Has Made

Cat, last night's shift RN, reported that Perry remained restless & was up until 5a. I received call from Dr @ 733a to receive consent to place femoral arterial line in his L thigh as yesterday with all of his fidgeting & frequent movements the L radial arterial line was compromised. Perry is also L handed so it was very difficult for him to avoid using his L hand/wrist. The tunneled access line ended up being placed in his R femoral artery on his R upper outer thigh.  The line was placed so that TPN (Total Parenteral Nutrition) could be given & later for use for additional medications & monitoring. Due to Perry's previous systemic yeast infection, TPN is not the preferred feeding method, although not having had nourishment for several days, it was decided that until he has the jejunostomy surgery on Wednesday that TPN should be started. Because the TPN solution is specially made for each patient's needs, it will not be available until 10p this evening. He began today's 3 hour dialysis @ 1035a. After dialysis, two chest tubes were removed without complications, received a shampoo & bath & then had Physical Therapy. The Physical Therapist was impressed with Perry's arm & leg strength & is planning to allow Perry to sit on the edge of the bed & try standing in the near future. He was transferred to sit up in the chair & switched to CPAP vent settings & was able to nap. Upon his transfer to bed, he slept a bit. This evening he received some Melatonin to aid his sleep tonight. Perhaps from exhaustion, he was not able to correctly tell me where he was or the year, but he knew his name & repeatedly answered "Misty DiGiovanni" to several questions. Later he asked me how the boys were & seemed rather worried about them both, so FaceTime provided reassurance that they were both okay & he winked & waved at Kim too. He then asked me, "What do you want from me?" My answer was for him to get a good night's rest, a big kiss & the okay for Denise & I to leave by 10p so we too could get a good night's rest. Perry being Perry then nodded & mouthed okay, gave me a kiss & closed his eyes almost immediately. Wishing you all a restful night. Please continue to count your blessings & say prayers not only for Perry but also for Perry's donor & the donor's family too. It has been 4 weeks today since Perry received the gift of life & his donor's heart & lungs have miraculously met every single challenge the last 4 weeks have brought & are they are just as determined as Perry has been throughout his entire life. God works in very mysterious ways. We are eternally thankful for the gift of living organs & that God has answered prayers that have gotten us to & through today!!! God bless all of you!!!![...]