Share. Connect. Love.

Posted 2015-09-07T06:24:00Z

September 6, 2015 Sing A Song!!!!

With Chad RN's AM call, I was informed Perry had slept for ~30 minutes after Ry & I left & continued to sleep for short intervals the remainder of the night. He did not have any additional episodes of nausea or dry heaves. His body twitching/jerks were less prominent when he slept. Upon our arrival today (Sunday), Perry was sitting up in the chair. Nathan RN shared that he had had a good morning except for the continued total body twitching & jerking motions. It was decided to hold his formula feedings until tomorrow (Monday) to allow his stomach a chance to rest relative to Saturday's nausea & dry heaving episodes. His nephrology Dr. planned to continue with Lasix IV today & scheduled dialysis on Monday. The lung transplant Dr. had no additional changes in his orders. Much to my dismay, Neurology plans to see him on Tuesday relative to Friday's requested consult. Denise, his Nurse's Aide, came in specifically to tell me that she & Perry had some fun as they listened to some R&B music while she cleaned him up & shaved him during the morning. She originally thought Perry was trying to tell her something & then she realized he was mouthing the words to the Stevie Wonder song that was on. They continued to sing/mouth along to other songs, & she was so thrilled to see him smiling & having fun. What great & joyous news for a Sunday!!!!! I also gave her great praise as she had also trimmed his nose hairs & had gotten all the unshaven hair that had been left beneath his nose for the last week or so. He was starting to remind me of Dave from the original "Alvin & the Chipmunks" with those whiskers! Perry was able to tolerate trach collar breathing for 1 hr & 5 minutes today without such abdominal labored breathing. Matt, his RT assisted him to talk with Perry being able to say his full name & also saying hello to Ryan DiGiovanni. He made it through the day without further nausea or dry heaves. I made a FaceTime call to Michael as both Ry & I were experiencing great difficulty trying to figure out what he was so very adamant about trying to communicate. After about 15-20 minutes, we finally figured it out. I also made FaceTime calls to my father & my (our) brother-in-law to wish them both a happy birthday with Perry doing his very best to keep his eyes open & mouth "Happy Birthday" & hi to all of my (our) family. Goodbyes were said to Ry which of course was hard as he must settle into serious academic studies for his 2nd year of PharmD school & a long stretch ahead between his next visit, but so happy we have FaceTime capability. He tolerated being up in the chair for ~7 hrs today which also was huge progress. Shortly upon return to bed & being positioned on his L side & covered with 2 warm blankets, he fell soundly asleep. A subtle nod was given when I kissed him goodnight & wished him good dreams. A very special "Thank You" to all of you & for what you each mean to us!!! For all of the prayers, cards, donations, gift cards, calls, text messages, emails, photos, volunteered time, acts of kindness, gifted talents, passionate healthcare providers that have made a huge impact in Perry's life, friendships & bonds, & all the ongoing unconditional love & support. This life can be so hard for all of us with the many trials & tribulations we must each face. Some of you have heard me say, "We are all in the same boat no matter what, but we are each rowing with different oars & through different currents at different times in our lives!" Wear/cling on to the life jacket given freely to each of us, be on the lookout for the beacon of Light through the the darkest & stormiest times, & always, always, always appreciate with childlike wonder & awe EVERY rainbow you ever encounter because He sees us through every storm. And how wonderful & beautiful it is when you get a chance to appreciate a double or triple rainbow. What a great promise that He loves us!!!!!! Hebrews 11:7 Can't wait until we can go fishing again Perry. I will have to hook all the worms because of the transplant unless we are trying to catch Old Walter in that case hot dogs will do just fine!!!!

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Comments (5)


    ❤❤🙏🙏 Tell Perry the out come is worth all of this hard work....Misty I think of you often...Paul and I send love and prayers. We look forward to the updates!!❤

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

    Misty: How sweet and welcome are your words. The Team Perry plus the efforts of Cleveland Clinic plus the God Miracles are beyond comprehension, but you have the education in the medical & procedures field. Perry is more than blessed, he is also Loved. What a lovely day it was to See the 3 of you via the FaceTime yesterday. Wonderful Words So Full Of Love, Always Thanking God! Our children make us so proud!

    4 years ago · Reply
  • Kristen Ahern
    Kristen Ahern

    Keep rowing to shore! Keep taking one day at a time. Everyone thinks the surgery is the hardest part, but It is the day to day tribulations after that really shows how strong you are. Keep focused and be thankful you make it through each and every day. We are all on the sidelines cheering you on. May God conTinue to hold you in the palm of his hand, and not squeeze too tight! Lots of love, Kristen Ahern

    4 years ago · Reply

    I love you both and will continue my pray vigil so that we can be together soon. Keep up the pose and the whole bit PEPE

    4 years ago · Reply
  • Mary Brewton
    Mary Brewton

    Misty, Love , love, love your words of wisdom that can apply to so many, I'm gonna spread that message that you are living so well! God Bless you all!

    4 years ago · Reply