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August 23, 2015 You Can't Keep A Good Man Down

8/23 Saturday Night shift report from Cat RN was that Perry slept well through most of the night & was awake at 5a. Chest X-ray & abdominal KUB (kidney, ureters & bladder) were completed with less sludge in his stomach & small bowel but still lots of stomach air distention. Labs that were completed were stable. Upon arrival, Jillian RN informed me that the Nurse Practitioner for J5-5 CVICU had written orders for Perry to be up in the chair. He was switched to a CPAP mode on the vent. He was a 2 man lift into the chair with the assistance of Jill & myself too. He immediately released several belches. He was content with his positioning only for a short while with lots & lots of fidgeting & the continued expressed desire to stand & walk & concerned about whether he could walk being connected to the vent. I was not very successful in all of my attempts to explain why he could not stand yet, walk yet, or continue to strain himself with his multiple attempts to reposition himself. He was able to be calmed at times by preoccupying him with the TV remote & only very brief eye closings. His Corepak NG feeding tube was removed as it remained out of place & another NG tube was placed to drain air & secretions from his stomach. He managed to make it 3 hours & 10 minutes before becoming completely exhausted & was returned to bed by a 2 man lift. He took a very brief catnap. Although oriented to time, person & place, he so desperately wanted to be standing, walking, & made several attempts to do just that only to be stopped. His brother, Jimmy displayed a discrete sign, "GO PERRY!!! We love You" during yesterday's Amatuer Golf Tournament held at Olympia Fields Country Club which is Perry & his family's stomping grounds & roots for their love of the game of golf. Unfortunately other signs made by cousin Nick & family were confiscated but their sign of love & affection did not get taken away as there "Ain't no way, ain't no how!!" that could ever happen!!!! Evening goodbyes were said to his brother Nick, Tonya, & our nephew Sam as well as to our sons. Michael needs to return to work & Ryan starts his 2nd year of UIC PharmD program. A nap was taken but interrupted due to abdominal discomfort (from the ileus/gastroparesis) & the release of air, more sludge, & stool. Nourishment by NG tube not yet an option & total parenteral nutrition (TPN) not a desired option, another day of managing all of the hard work without much to go on for energy or reserve. Abdominal discomfort & inability to find positions of comfort despite frequent repositions made by staff, me, & my sister continued. He was given Benadryl for itching (& with our high hopes it would allow him to get rest) & Haldol to assist with agitation. We finally got the "yes" nod that we could leave to get rest at about 115a.

 

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 (3)

  • Frank E Costello
    Frank E Costello

    My Father was just like this and finally we had him sitting in a cardiac chair and he got some relief . The fluid build up is the problem my Dad had and I used to Stand him up holding him up, sit him down and he try to lay down only to ask to stand, sit and lay down for hours we did this and finally after all of us had done the best to make him comfortable my brother Sammy said lets try this chair and it worked and he slept for the first time in days. He also was on CPAP and was forced to continue this until he was finally able to breath on his own.. I hope I am not adding to the list of things people are advising all I am trying to do is help in my own way.

    3 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    Two steps forward, one back is still a forward gain! Glass is half full and will someday bubble right over the top and Perry will not just be standing but walking. Hugs and prayers.

    3 years ago · Reply
  • Eileen Biltgen Hernley
    Eileen Biltgen Hernley

    Such great news. I missed the sign while I was watching the golf tournament I am sure that made Perry feel great. I am sure you are exhausted, but look at his progress from all your love and from his family. We are all praying for him. Eileen Biltgen Hernley

    3 years ago · Reply

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