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Posted 2015-11-19T09:33:00Z

Post for November 17, 2015

In addition to awakening intermittently for oral & trach suction & position changes, Perry was up at least 4 other times during the night needing to be placed on the bedpan according to Nate RN. Unfortunately his abdomen was significantly more distended & rather firm this AM with no complaints of nausea or vomiting. No fevers during the night & all other vital signs within normal limits.

Jay RN & orientee Layale RN were his assigned day shift RNs. The Dialysis RN, Camille, arrived @ ~720a to begin setting up the dialysis equipment. Denise RT, new to him, started his respiratory nebulizer medications. Dr. Jean-Pierre Yared, Intensivist rounded @ 8a with the plan for Perry to have dialysis & bedside bronchoscopy after completing dialysis. Review of chest CT scan revealed a very slight decrease in the L pleural effusion & small part of the L upper lung being occluded. I was informed nothing was grossly abnormal on the abdominal CT scan. I informed Dr. Yared that Perry had experienced significant abdominal distention intermittently since February with ascites from his congestive heart failure & post-transplant which had been an issue but for about the last 1-2 months it had not been an issue until about a week ago.

Perry began to complain of sharp constant abdominal pain. Tylenol was requested initially when the pain began but due to having to wait for Tylenol to be sent up from Pharmacy, he began to experience increasing discomfort rated it @ a “9” on a 1-10 scale & was repeatedly asking “How much longer before I get the Tylenol?” “Please, please, it hurts” so I informed Jay RN. By 0835, he was given Dilaudid 0.2 mg IV. His formula feeding was stopped. He was back to sleep by 0845a. Due to issues with the dialysis machine, Perry did not start dialysis until 902a with the plan to remove 1.5-2 liters of fluid over a 4 hour span. He remained asleep seemingly more comfortable once the Dilaudid took effect. One of the residents informed that his spleen was more enlarged on the CT scan of the abdomen - he has had an enlarged spleen for years so not sure if it has enlarged in comparison to previous abdominal CT scans.

A waffle seat cushion was brought in by Kim as a free trial product. Since Perry was asleep she plans to return.

I signed the consent for bronchoscopy to be done. The Healing Service RN came to see Perry @ ~1155 & he agreed to a foot massage with lavender lotion. He returned to sleep as he received the massage. She then provided me with Reiki - so got to relax a little myself.

At 1215, Dr. Koval, Infectious Disease, rounded & informed me that thus far the bacteria, Citrobacter, is what has grown in the bronchoalveolar lavage (BAL) specimen culture done on Friday, November 13. (Lavage = administering fluid to wash an area, in this case the bronchial tubes & alveola [tiny air sacs where oxygen & carbon dioxide are exchanged]. This same bacteria was present in the BAL specimen culture done in October & is either there again or was never eradicated. I informed Dr. Koval that a repeat bronchoscopy will be done today after dialysis & of the plan for L pigtail catheter to be removed if Cardiothoracic team indicates such. I also informed her of the chest & abdominal CT scans having been done yesterday as well as Perry has continued to have frequent loose & watery stools that are now green with a significant increase in abdominal distention since last night.

According to MyChart the result of the specimen taken for Aspergillus galactomannan on 11/13 is <0.50 with the standard (normal) range being <0.50.

Reglan was administered ~1250p to facilitate bowel motility in attempts to lessen the abdominal distention.  

Dialysis ended @ 110p with a total of 1.5 liters of fluid removed. 

The bronchoscopy was done in his room @ 200p-232p with IV Propofol 30 mg & Fentanyl 100 mcg given for sedation. I was allowed to stay with him during the procedure & got to visualize his new lungs & the sutures connecting Perry's original anatomy to his donated lungs - so fascinating to see how intricate we are made. Lots of mucus secretions were removed & several layers of a large blood clot causing the occlusion of the upper lobe of his L lung were removed. He will have to undergo a repeat bronchoscopy tomorrow in order to try to remove hopefully the rest of the large blood clot. His BP dropped so he was given Neosynephrine then his BP increased to 161/89 so they needed to stop the bronchoscopy. Perry tolerated the procedure otherwise very well & continued to sleep through the remainder of the afternoon except for position changes & several uses of the bedpan.

Acetylcysteine 20% (Mucomist; 200 mg/mL) 400 mg nebulizer treatment every 4 hrs @ 9a, 1p, 5p, 9p, 1a, 5a was ordered after completing the bronch to facilitate liquefying secretions.

Dean PT stopped by several times throughout the day in attempts to work with Perry but due to procedures or sleep related to sedation he was only able to complete passive range of motion (PROM) leg exercises as Perry slept.  

Dr. Brian Stephany, Nephrology, rounded @ 255p. I was informed that Perry will most likely at this point require dialysis for the remainder of his life as it has been 3 months+ that he has been on dialysis & they are not seeing the values that they had hoped for by this time. He said "never say never but..." Perry is of course not eligible for kidney transplant. He informed that dialysis expenses are paid for rather well by Medicare with the diagnosis of End Stage Renal Disease. Perry is NOT yet fully aware, at least in a conscious state, as he was asleep with the effects of Propofol when this information was given to me. Not what I wanted to hear & of course it will be even harder for Perry. So we've added another chapter to our post-transplant journey, & there will be even more regimen to his (our) life unless another miracle should occur. I was able to shed a few tears as Perry continued to sleep & this evening with my parents away from his bedside. We are fortunate that his kidneys did not fail BEFORE transplant which would have automatically removed him from being able to receive a heart/lung transplant, & he would NOT be here today if he had not received the heart/lung transplant as we have been told he had ~ a week of life remaining. The physicians did all that could possibly be done pre-transplant to protect his kidneys & that was a VERY difficult challenge for several years given the years of compensation his entire body his lived through & all of the medications he had to take to stay alive pre-transplant. We had been informed pre-transplant that due to his congenital heart defect that there was a higher incidence that his kidneys were likely to fail in the initial weeks post-transplant as the kidneys become so confused with the signals they are receiving. The anti-rejection medications that he must take lifelong are also damaging to the kidneys. His body has been through so many stressors post-transplant & during the cardiac arrest which resulted in brain & body anoxia (lack of oxygen) creating even more stress on the kidneys. I am doing my best & Perry will need your prayers that he will be able to take in this information when he is told. I also ask that you pray that God, Jesus, & the Holy Spirit will speak loudly or with gentle whispers to Perry that he is loved & he (we) are not to try to understand “why” all of this has had to happen to him during this lifetime but to continue to move forward, let go of what it is that he (we) need to surrender, & just believe & have faith in the promises that have been made.

Kim from OT stopped by later in the afternoon & did Thera band arm exercises with Perry.  This week’s Psychiatrist rounded & asked Perry basic orientation questions to time, place & person.  He was struggling to answer what year it was repeatedly saying “November.”   I informed her that Perry had undergone dialysis, a bronchoscopy,  received Dilaudid for pain as well as having received sedation medications for the bronchoscopy.  

His formula feeding was held throughout rest of the day & into the night.

For Christmas last year, I bought Perry the movie Brian’s Song as it is one of his favorite movies & he identifies with how Brian Piccolo prepared as an athlete to fight his opponents both on the field & off the field. I revised one of the movies memorable lines & included it in his gift: "Perry, you too have a heart of a giant & a rare form of courage that allows you to kid yourself & your opponents, & a mental attitude that makes me proud to have a friend who spells out the word courage 24 hrs a day, every day of your life!"

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Comments (6)

  • Joni DeBusk
    Joni DeBusk

    God told your parents they needed to be there. I am thankful you have their love and support in person. God's will, His plan in His time. Always remember that you two have many faithful prayer warriors and the power of prayer is an awesome power. E-Hugs and lots of prayers. Love, Joni & Ken

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

    CCICUJ55 24/7 The center of the universe currently for both Perry/Misty, it teems with constant activity as Drs. & dozens of Staff from all levels strive for perfection in their chosen fields, each to allow for betterment of quality for human life. What a facility and team, where failure is hardly a consideration, instead it is=Ok, what's next! No one is just another patient here, instead it's like the small town community where Ann & I grew up, People loving people! Isn't that what God intended for us? Life has its cycle in its beautiful beginnings and fulfilled endings! Here daily lessons are learned, assimilated, developed and become the immediate daily used normal practice! Yes, the financial costs are staggering, but God gave us intellect and desire to live life to its fullest, so we humans might attain that for which he created us for! Human life and it's betterment is the common goal here! What has real value=Metal, stones, printed paper or Additional time added to our lives! Thank you Dearest God for Love and Time to enjoy it!

    5 years ago · Reply
  • Jerry Ann Dye
    Jerry Ann Dye

    Dear Misty, Thanks be to God for his ever Hls ever present Grace, giving you and family strength in this difficult time. You have been in my thoughts and prayers. Love, Jerry Ann Dye

    5 years ago · Reply
  • Joy Bolander
    Joy Bolander

    My name is Joy Bolander, I am a Lutheran Pastor. My husband worked with Denny Barker at CSX for years. The story of Perry is inspiring, to say the least. I will keep Perry and his family in prayer. We do serve an awesome God, who always keeps his promises. God bless all who travel this journey with Perry.

    5 years ago · Reply
  • Kaye Cain
    Kaye Cain

    My name is Kaye Cain and my husband Jim also worked with Denny at CSX. We see Ann and Denny regularly. Misty, you and Perry have been on the prayer list at our church since the beginning. I know that the strength you have both displayed has to come from God. May He continue to bless you both. Our love and prayers to you all.

    5 years ago · Reply
  • Mary Murphy
    Mary Murphy

    Dennis and Ann, You and your family are always in our prayers. May you feel Gods peace and the love of his people surrounding you as you go through this difficult time. God Bless you. Roger and Mary

    5 years ago · Reply