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Posted 2015-12-23T07:41:00Z

Post for December 21, 2015 - Start of Week #22 in J5-5 CVICU

Brief update:  Perry has been seeming to do much better with secretion management with the trach with sub-epiglottic suction port in place.  Dr. Wayne Tsuang, this week's Pulmonology physician on hospital service, informed us that during today's weekly meeting of physicians that discuss Perry's plan of care, it was agreed upon that he should be further evaluated by Dr. Raymond Onders for the possibility of a diaphragm pacer.  Dr. Onders is affiliated with University Hospital Case Medical Center in Cleveland.  He is currently on vacation until January, so Perry will undergo further evaluation in January.  

Dr. Balaram Anandamurthy, Cardiothoracic Anesthesia, informed us that Perry is to have the placement of a more permanent central venous access catheter for dialysis & other purposes placed in his neck tomorrow by Dr. Dale Marsh.  The trialysis tunneled catheter in his L groin has been indicating some difficulties during dialysis as it is a temporary central line access meant to last for ~2 weeks, but it has lasted for ~ 6 weeks.  The neck access will provide less risk of infection compared to his groin.

Dr. Emilio Poggio, Nephrology, agreed to a twice a week dialysis regimen if it is at all possible.  He will be dialyzed today & again on Thursday unless his lab results reflect the need to have dialysis on Wednesday.

Perry has continued to show progress with trial collar trials & physical therapy.  He continues to be slowly weaned off of the anti-epileptic (seizure) medication Keppra & adjustments are being made to Primidone as the myoclonus to his upper & lower extremities has been increasing.

We continue to be so very grateful for his progress & the prayers of all of you on "Team Perry."  The last 2 months have definitely been a challenge for us due to the holidays as we miss our family, friends, traditions, & home even more.  Perry has tried to move at a fast pace when he wants so badly to be "home" & continues to give it all he has got with his God-given gifts of determination & strong will.  He is moving forward in the right direction with witness to so much more hope than ever thought possible.  In the Spirit of Christmases Past, Present & Future... & from Charles Dickens' A Christmas Carol "God bless us, everyone!"  And once again, we thank all of you for providing us with love, support, strength, & prayers.  And a special thank you to my sister & all of her family for getting me through last week!!!! 

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Comments (1)

  • christi christides
    christi christides

    God bless you , I know that this is a strain on all of you , I cant even imagine. My thoughts and prayers are with you all , Merry Christmas !

    4 years ago · Reply