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Posted 2015-08-12T23:28:00Z

August 12, 2015 - Weaning Update

Perry was weaned down to 0 on the propofol for approximately 1.5 hours. We believe we were getting some eye blinks, double eye blinks, eye closing, minimal eye tracking here and there on command as well as a tear, but it is very hard to decipher commanded vs. twitches. We believe he is working very hard and the nurse agrees she has seen some command following, but did say "I don't know if it is just me, but I am seeing a little something" (she's in the same boat as us).

Since his twitching intensified during the weaning process, they put him back on propofol (back up to 30 now) to curtail some of the movement as a precautionary to be sure not to put too much stress on any blood vessels/veins. We told him that we would give him some time to rest and be back in there to watch the Cubs game at 8:05 ET. When we said this we asked him to close his eyes and it seemed like he did so slowly (this was also just a few minutes after upping his propofol to 30 from 20 though).

We received a package from Perry's brother Nick and his secretary Terry Lanzi full of recognizable Chicago goodies (Garrett's popcorn for us and the nurses, Chicago Cubs hat, an Italian hat, a butterfly pin of their mother Doreen's and an Ernie Banks signed baseball - we're keeping that one with us for the time being and bringing it in while watching the Cubs games)! Thanks! Ryan also received some promising information directly from a survivor of anoxic brain injury after posting on her youtube video, and she also agrees that it is a very long recovery process and to keep the faith. They have had a few back and forth emails now. We also received word from the infection team that the second round of cultures show no new growths (yeast is still present), and his white blood cell count continues to trend downward (last we heard it was 7,410) so hopefully he can continue to fight that off.

We are awaiting the next set of trials/direction from all of the teams, so we will be sure to keep you posted on the latest information. Misty also wanted me to post an apology that she has not been able to respond to EVERYONE in a timely manner, but please bear with her and understand that our support group is HUGE and response is overwhelmingly awesome, so doing so can be very cumbersome at times and no matter what priority #1 is Perry. We love you all and are doing our best to be diligent to post any new news on this site as soon as we can, so please don't be discouraged if some of your texts are not answered - I think you can all understand :) 

A good rule of thumb - "No news is good news"!

 

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)

  • Dennis G. Barker
    Dennis G. Barker

    What a TEAM at Cleveland Clinic. The WE AND GOD TEAM includes=The Doctors & Staff, "The DiGiovanni Team", and All the Prayer Warriors that diligently await these so informative postings, which includes personages around this world offering up prayers of Faith, for your miraculous fight, Dearest Perry! Stay the course Man of Steel, your goal of health attainment is within you, with Gods assistance.

    4 years ago · Reply
  • LINDA  ALLEGRO
    LINDA ALLEGRO

    So happy to hear this....I keep feeling that his strong will and the love he has for his family is going to keep him fighting...love to all❤

    4 years ago · Reply
  • Mary Brewton
    Mary Brewton

    Perry, you have so much to live for (just see how great the Cubs comeback is going)! We are encouraged by the reports (thanks so much for posting here) and remain optimistic as we pray for you to regain your health day by day with the help of your medical team, family and friends and God's grace. Keep the faith, Mary

    4 years ago · Reply