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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!!!"

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Comments (3)

  • Joni DeBusk
    Joni DeBusk

    Good Morning and God Bless! Ericka fizzled out so Floridians are breathing better this morning. I pray both you and Perry had some good sleep last night and that today will be a good day with forward progress. God does work in wondrous way....unbelievable Perry's nurse from NW Memorial walks back into his life. God is so good. The power of prayer is an awesome power and lots of prayers flowing for Perry and family and his medical team. Love, Joni & Ken

    4 years ago · Reply
  • Dianne Cook
    Dianne Cook

    I keep saying this...Perry is an amazing man! Strong beyond belief! And you, my dear Mistsy, are an amazing woman. Even stronger than Perry if that's possible. I wish you guys were in Chicago...I'd love to come see you. As always, can't wait until the next post. Prayers and hugs to you all. ❤️❤️

    4 years ago · Reply
  • PEPE DIGIOVANNI
    PEPE DIGIOVANNI

    I am so glad to read all these wonderful things,. and the improvement so far. We are and will continue to keep him in our prayers. PEPE & MARLENE

    4 years ago · Reply