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Posted 2015-08-28T06:48:00Z

August 27, 2015 - Active Participation & Having the Right Tools = Progression

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.   

Upon my arrival, Perry was undergoing his first Occupational Therapy session with arm & leg strengthening exercises.  He worked hard during the session & ran out of steam.  I will be assisting him with all of the same exercises several times throughout the day in order for him to gain muscle strength, tone, & more controlled movement of his hands/feet & arms/legs. Neurology plans to reduce/discontinue the anti-seizure medications & hopefully be able to provide alternatives that may assist with the involuntary shaking/tremors of his extremities.  I had been repeatedly requesting Speech Therapy as he tires quickly using up his energy stores & becomes frustrated attempting to communicate his needs, wants, pain, feelings via mouthing of words/sentences, facial expressions, & signaling gestures while experiencing the involuntary shaking/tremors.  Lip reading is a learned skill & even though both my sister & I are somewhat versed in it due to our hearing impairments, Perry just doesn’t have the energy to repeat 4-5 times what he’s trying to communicate.  With both Occupational Therapy & Speech Therapy involved in his care, his depression will hopefully be significantly lifted, as he can begin to participate more fully in his recovery, healing, & daily living activities.  Give him a challenge, & he will do whatever is necessary in order to succeed. That’s what Perry has had to do all of his life.  Adaptive tools & resources for communication & movement are beneficial to living life & can help provide a “voice.”  We are heading in the right direction!!!         

This morning, I needed to inform Perry about information that had been shared with me by one of the General Surgery physicians who had called me Tuesday evening after Perry’s jejunostomy procedure.  He informed me that during the procedure his liver was visualized with the presence of lots of scar tissue (an expected finding due to his previous surgeries) & cirrhosis (inflammation) with increased fibrosis present, so a liver tissue biopsy was taken & that it would take 4 days before results would be available.  As the day progressed, the Lung Transplant attending physician informed us that there was not cirrhosis or liver cancer according to biopsy results.  The Ileus & possibly biliary stasis are present.  Perry’s abdomen was quite distended so another KUB xray was done with lots of "gas" identified.  GI/Hepatology physicians consulted & will now be involved in Perry’s care as well.  At present, we’re being told that the liver issues are related to effects of his pre-existing cardiac condition, congestive heart failure, & the cardiac arrest event.  Another chest tube was removed today so he's down to one now. He was able to be up in the chair toward the evening, napped & upon return to bed he continued to rest/sleep into the night. TPN was discontinued @ 10p.

I adapted a quote from the movie Brian's Song for one of Perry’s Christmas gifts last year & included it with his gift of the movie. "Perry, you too have a heart of a giant & a rare form of courage that allows you to kid yourself & your opponents, & a mental attitude that makes me proud to have a friend who spells out the word courage 24 hrs a day, every day of your life!" We are fortunate that both of his hearts have been those of a giant!!!!  Thank you Perry for asking me out on our 1st date 37 years ago!!!!

 

 

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Comments (6)

  • LINDA  ALLEGRO
    LINDA ALLEGRO

    Thinking and praying for you. He is the eye of the Tiger. Love to you both❤😘 Paul and Linda

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    Okay, huge goose bumps and happy tears flowing this morning reading this post. Thankful for all the forward progress, only one tube to go. HURRAY! I can feel the love....it jumps right off the page AND you are your father's daughter since you are both "writers". Maybe in your spare time, write a book, "Perry's Journey". Hope today is a good day! E-hugs coming your way. Prayers flowing. Love, Joni & Ken

    4 years ago · Reply
  • Brenda Witt
    Brenda Witt

    This is such great news you are sharing. Like you have said all along it will be slow and steady. He keeps proving his determination. With lots of prayers and faith this man called "Perry" will keep progressing. Love to all the family. Alann, Brenda, Tiffany & Andrea

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    My Bible study this session is "God's Plan".....just think about His plan and putting you and Perry at the same dance thirty-seven years ago. Ken and I met at a dance 19 April 1958 and still dancing today. Class home work last week was to draw a picture of HOPE. UGH! Hard to put hope into words let alone draw a picture. Think about it. What would you draw? What would Perry drawn?

    4 years ago · Reply
  • christi christides
    christi christides

    You are both very inspirational !

    4 years ago · Reply
  • Cathy McIsaac Branigan
    Cathy McIsaac Branigan

    Perry is amazing as are you Misty.God surely had a hand in matching you two together,You are a formidable pair. My thoughts and prayers continue to be with all of you daily. Love and prayers always, Cathy B

    4 years ago · Reply