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Posted 2015-09-14T06:12:32Z

September 13, 2015 - Game Day Wins for Perry

With Propofol titrated up to 15, Perry had a few episodes of restlessness & agitation during the night according to Rachael RN but did sleep for a few solid consecutive hours. Thank goodness Ryan notified me today that it was Week #1 of football, & I needed to download the NFL Sunday Ticket app on my iPad so that his father could be tuned into the 1:00 ET Bears vs the Packers game. Upon my arrival today, he had been taken off the EEG video surveillance. Summer RN had him pretty well confined in bed with extra pillows added along the lower portion of his bed to prolong his escape attempts as she was slowly weaning him off the Propofol & was down to 15 mcg/kg/min (6.1 mL/hr). Although he kept his eyes closed, he was able to respond to my questions with nods. He nodded "yes" that he wanted to listen to the Da Bears game馃張 - all huge "First Downs" compared to the last 4 days & previous lack of interest in the winning Cubs!!!!!!! He acknowledged that he was having pain related to the FMS (rectal catheter), that he was hot, & that he felt like he was running a fever. He was receiving a unit of blood for a hemoglobin of 6.1. His temperature was 37.3 C = 99.14 F which pre-transplant would be a fever for him for his normal baseline & heart rate in the 110s/minute. He was not converted to CPAP today to give his body a rest. With the Bears & the Cubs game losses today, it was probably good that he was no longer connected to the EEG. He was able to remain calm today with being weaned off the Propofol. Formula feeding rate was increased to 65 mL/hr without TPN infusion. Guaiac test for blood in stool was negative. Early part of day his abdomen was soft & non-distended. He began burping a lot ~435p, suddenly pale, & able to nod "yes" to being nauseated & having pain. He had lots of rumbling in his abdomen, so I comforted him with my hand warmth & gentle counterpressure & bent his legs so he could push against my chest. He was definitely STRONG with his pushes!!!!!!! So we did cold cloth to his forehead & leg pushes until pain subsided with anti-nausea medication given & his feeding turned off. He then began to mouth words & opened his eyes briefly. He then opened his eyes for longer periods & was able to answer that he was Perry & at the Cleveland Clinic. He mouthed, "I know why I'm sad" to which I provided him updates related to what was bringing him sadness. He then opened eyes to look at me & Summer & was able to track me as I moved to other side of his bed. He mouthed @ 510p that he wanted to call Sam but then quickly fell back to sleep. I called them on his next episode of alertness - he mouthed question but couldn't get it at the time. He rested calmly & quietly without fidgeting & escape movements most of the afternoon. He experienced intermittent abdominal pain with increased abdominal distension with the need to remove his FMS as it was not properly draining liquid stool. He then was doing well but started getting agitated with frequent fidgeting & leg escape attempts just before I was preparing to leave mouthing "Get me out of here" & began pushing me away. He was given Haldol IV & then began to rest & then sleep calmly without the Propofol being given at my departure.

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Comments (5)

  • Joni DeBusk
    Joni DeBusk

    Small step forward! E-hugs to both of you. Lots of prayers. Love, Joni & Ken

    4 years agoReply
  • Denise Witt
    Denise Witt

    Thanking God for report of progress. Asking Our Father in Heaven to order a proper escape & freedom plan for encouragement to Perry, Misty & Cleveland Clinic Physicians, Nurses & staff. May they see evidence of The Great Physician's miracles, mastery & majesty; may they take notice & sing His praises. May He be pleased to speed Perry's recovery for good & glory! That is our urgent plea in Jesus name. Amen! Continuing to give thanks to & offer up prayers for our dear donor & family. Love, Garry & Denise & sons & daughters Isaiah 26:3 "You will keep in perfect peace him whose mind is steadfast, because he trusts in You."

    4 years agoReply
  • Mary Brewton
    Mary Brewton

    Misty you are Perry's best advocate, so our prayers for you are continuing as that is not an easy job. This is just another hill for Perry to climb and my thoughts are that he is up to it with God's help. He has come so far, please give him lots of encouragement from all his co-workers as we await more good news!

    4 years agoReply
  • Greg McCullough
    Greg McCullough

    Congratulations Perry. You've made it to the point of hospital madness, you said your ready to get out of there. I believe we may have turned the corner. Progress comes in small steps. Calculating each and every moment, and finally your brain has had enough. It's time to regenerate each compartment of that body and get those neurons and synapsis firing. You have made it passed some of most difficult days a man could ever endure. Reach inside and believe you have the strength to continue. I know you have it. Believe me, I've seen it in your eyes before. Lets see it again. Just believe Perry. The best help anyone can ever ask for is just a step away. We are all here for you. Greg

    4 years agoReply
  • Dennis G. Barker
    Dennis G. Barker

    Dearest Perry AND Greg: Dear men I Salute you. having been there! Proud to state I am PROUD to know you both, and the families you came from, both strong branches from Fine Family Trees. You TWO STALLIONS from Illinois and Indiana have became THAT OF WHICH LEGENDS ARE MADE! Both with attitudes of endurance, and unending FAITH, "FULL SPEED AHEAD, LETS ROLL, MAN THE TORPEDOES, UNFURL THE COLORS, FOR GOD AND COUNTRY, UNITED WE STAND!" You both have been given health Pinnacles to Climb, and you and your family support teams are ALL IN! Know that you are both backed by an ARMY OF PRAYER WARRIORS, and ALMIGHTY GOD, THE GREAT I AM, he who answers prayers before they even leave the mouths of those who offer them up to him, is your commanders. We so honor and love you and yours. Dennis & his Lovely Ann.

    4 years agoReply