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Posted 2015-10-18T02:19:00Z

Post for October 16, 2015 - Waiting, Waiting, & More Waiting

He slept well for the most part in between his usual awakenings.  His feeding was once again stopped a few hours after midnight in preparation for pigtail catheter insertion.

Dean began PT this morning with a slide transfer onto the Moveo.  Perry was able to complete leg squat reps without much difficulty & with good control.  After the return transfer onto his bed, he was then assisted to sit at the edge of his bed.  He had quite a bit of shaking & became nauseated initially with both lessening in severity as he continued to sit.  Dean helped him to rise to a fairly good stance for a few seconds & pivoted him into the recliner with Tina & I assisting Perry & the vent apparatus. He was able to remain in the chair for ~1 hour & then required assistance to stand & sit in order to utilize the bedpan, stand again very briefly for cleansing, returned to chair & then lifted in sling via the ceiling lift back into bed.

Denise provided a clean shave & bath.  She & I sang along to Motown, & we danced a little too like we usually do to help liven up our spirits... he’s not quite with the program yet but we still try to engage him.  Bathtime is not all that enjoyable as he gets chilled very quickly.        

Kim from OT came to see Perry, but he was in the midst of bath preparation so she planned to return later in the afternoon. He requested trach capping which began @ 201p on 4 liters of oxygen via nasal cannula.  Kim from OT stopped by during capping & since he needed to remain focused on capping he declined OT.  She provided us with visual handouts for therapeutic putty hand & finger exercises. She plans to work with him on Monday.  He continued to tolerate trach capping for his longest time ever - a record 67 minutes!!!!!!   He deserves the Cowardly Lion’s Medal of Courage, the Tin Man’s Ticking Heart Clock, & the Scarecrow’s honorary degree of Th.D. (Dr. of Thinkology), & someday…. just like Dorothy, a return to a place called home.  “There’s no place like home, there’s no place like home, there’s no place like home” …. If all I had to do was click my heels three times & all of this were only a dream... I’d be getting awakened by my little dog, (my Toto) Wrigley. Until then, I’ll keep singing, “Somewhere Over the Rainbow.” It has been & always will be the love of God, family & friends that will see us through….. & the gift of very strong & young heart & lungs that were received from Perry’s most gracious donor & the unselfish final consent of his parents.  We all must keep the faith going & BELIEVE in His many promises.  Noahic Covenant (Genesis 9:1-17) & New Covenant (Hebrews 9:1-28);

I thought this was an appropriate find relative to Perry's donor:

Dr. Eduardo Mireles-Cabodevila came to see Perry & examined him on different ventilator settings.  He used the analogy of a tree to describe the phrenic nerve.  From  “The phrenic nerve begins in the brain and then continues down to the first few vertebrae of the spine, where it then splits. The two nerves then continue through each side of the body, with the right side coming in contact with the windpipe and heart, while passing the lungs. The left side also comes in close contact with the heart, with both sides eventually ending up in the diaphragm. Because of its location and proximity to both the lungs and the heart, the nerve can be impacted if there are specific conditions in either of these organs. If either of the nerves is damaged and signals between the brain and diaphragm are interrupted, normal breathing may be prevented.”  

Perry has been on CPAP, continuous positive airway pressure, via mask for at least the last 15 years during sleep for Obstructive Sleep Apnea.  CPAP provides mild air pressure to keep the airways open.  Since Perry utilized his CPAP machine with 100% compliant during those 15 years, Dr. Mireles will plan to try Perry on BiPAP, bilevel positive airway pressure, via mask when he is trach capped or trach collared with full deflation of the trach cuff to increase the amount of area that air will be able to pass through the trach tube & his trachea.  Bilevel positive airway pressure means there is positive airway pressure during both inspiration as well as expiration.  This will allow Perry to be off of the ventilator for intervals.  Dr. Mireles did not want to go into detail what other procedures may be necessary at this time until time goes by & more is learned as to whether his phrenic nerves have been stretched or damaged/severed.  He plans to continue to see Perry & will care for him on an outpatient basis in Cleveland.   His equivalent in Chicago is Dr. Lisa Wolfe who is actually Perry’s Pulmonologist at Northwestern Memorial Hospital.  

Rachel RN contacted Interventional Radiology on eight separate occasions during her shift.  Due to other scheduled & added emergency procedures needing to be completed, Perry’s procedure time repetitively kept getting pushed back as it had been over the previous 2 days as well.  On her last call before ending her shift, she was given an 8p timeframe.  Josh RN relayed concerns to the Nurse Manager on duty, Paul RN, & requested him to contact Interventional Radiology.  Paul then informed me @ ~1030p, that Perry would have the procedure done today & was to be called for in ~½ hour.  After an additional hour, that timeframe was again changed to ~15 minute.  Perry at least was able to sleep throughout the wait.  He was then transported to Interventional Radiology by Josh RN, a RT, & a Patient Transporter with my accompaniment.  

After the procedure was discussed with Perry & me, I consented for the mediastinal fluid collection pigtail drainage chest tube insertion under local anesthetic & guided radiologic imagery.  Prior to the procedure, the physician viewed the consolidated area from his last chest CT scan.  If you ask me, the images of the fluid collection appeared to be mighty large.  The physician came to get me @ ~110a reporting that the procedure went well, with a large amount of air released & ~100 mL of liquid serous secretions drainage from the pigtail catheter as well as the presence of a large consolidated hematoma outside of the lung.  By the time he was returned to J5-5 CVICU Room 8, 200 mL of serous secretions had drained from the pigtail catheter. His formula feeding was soon resumed @ 30 mL/hour.  Perry was asleep & I was soon in the recliner at his side.

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Comments (2)

  • Dennis G. Barker
    Dennis G. Barker

    If ever two people were made for each other Misty I would have to say that you and God were in total agreement with the selection of Perry, for you to set your (Nurses) Cap for! Truly a match made in heaven! Goodness how could anyone else even guess on even the spelling of all these conditions, procedures and possible results! Your Mother raised you well! Keep up the terrific attitude, cause Little Girl, you're winning! Thank you Dear God for the Chance to fight!

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    Ditto what your daddy said. I even ask Ann if you decided to become a nurse after meeting Perry....was and still is definitely a God thing. I seldom understand what you write but so thankful you are this man's wife because he would not be anyway near as well as he is without your constant input and keeping everyone on their toes. I just figured out what your problem is!!!! YOU FORGOT TO BRING YOUR RUBY SLIPPERS! Darn! Praying you get to sleep in a bed to take care of your back also. E-Hugs and lots of prayers. Love, Joni & Ken

    4 years ago · Reply