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Posted 2015-09-01T05:19:00Z

August 31, 2015 The Start of Week Six

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.  

The start of week six post-transplant began with 3 1/2 hours of dialysis beginning @ 8a.  The nephrologist stated he was "cautiously optimistic" that Perry's kidneys are doing well.  He plans to hold off on dialysis until Thursday or possibly Friday if his lab values remain stable.  He has been receiving low doses of Lasix IV challenges, & the kidneys seem to be responding very well.  Dialysis is extremely energy draining, so if Perry is able to tolerate not being dialyzed until Thursday or Friday than some of that energy can be utilized for longer time frames off the ventilator & to continue with PT challenges.  Per discussion with Dr. McCurry (Cardiothoracic Surgeon) today, Perry is NOT to be transferred to a LTAC (long term acute care) facility for rehabilitation due to the many health conditions & risk factors involved.  He is anticipating that Perry will need to remain in the CVICU for ~1-2 wks if he continues to progress favorably.  He will then be transferred to the Heart/Lung Transplant Unit on J8-2, & later to another unit at Cleveland Clinic for continued rehabilitation.  Perry expends a significant amount of energy with attempts to communicate.  Although Michael & I continued to improve on our lip reading abilities, it is still very difficult at times to identify some of the words he is trying to say.  He becomes frustrated & at times extremely disappointed & depressed. I located the Xerox Department & was able to get a couple of the communication tools provided by the Speech therapist enlarged & laminated in hopes of expanding his abilities to communicate thus conserving his energy.  Perry's nutritional caloric needs were going to be researched further & adjustments made accordingly.  

His PT session focused on leg exercises, unilateral leg pushes on the Shuttle Mini Press, sitting on the edge of the bed & the grand finale an assisted pivot into the chair.  He fell asleep for a short nap.  The Respiratory Therapist, Bill, in preparation to allow Perry to speak had him cough with an extremely large amount of post-nasal mucous drainage expelled & suctioned.  He then released the cuff & Perry was able to speak saying "Hi" to his sons Ryan & Michael.  Then Bill capped his trach which Perry tolerated only very briefly.  He was then switched to trach collar breathing on 35% humidified oxygen which he tolerated for ~1 hour.  Needless to say, Perry napped a bit while in the chair.   

The Hepatalogist informed me that Perry's liver functions seem to be doing well at present.  His anti-rejection medications are being adjusted accordingly.  He will continue to be involved in Perry's care as needed but currently things seem to be improving.

Michael returned home this evening & is anxious that when he, Kim & Ryan return at a later date, Perry will be so much further in his recovery.  Everyday he works so very hard, & he is not at all happy with us or his medical team when we tell him he must slow down & allow his body to catch up with what his mind is telling him.  Both of his hearts have exemplified such heroic qualities.  Life is precious, & we are so very thankful!!!    

 

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!

 

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Comments (2)

  • Lisa Lewis
    Lisa Lewis

    Every morning I read the update from the day before! I end each with Perry and you in my prayers and begin my day with Perry's successes! He continues to demonstrate such drive and determination. I hope you, my dear friend are taking care of yourself ... eating properly, resting and trying to sleep. I worry about BOTH of you! Hugs and kisses to you and Perry! Love you both!

    4 years ago · Reply
  • Dennis G. Barker
    Dennis G. Barker

    Misty: God's wonderful plan of creating Man & Woman and the delightful bond that only two can share. Ann & I agree that you found your One, just as your sister Denise was likewise successful. Parents hope that their children will find God and that they find will also be blessed with the true love of their life. You have God and Perry, the True Loves of your life. We are so blessed!

    4 years ago · Reply