Share. Connect. Love.

Posted 2015-10-20T07:13:50Z

October 19, 2015 - Start of Week #13 in the CVICU J5-5

Perry slept per his norm & was cared for by Rachael RN as well as myself as needed throughout the night.  During his morning PT session, Perry was assisted to stand from his bed holding onto walker with Dean & Larry supporting him, me supporting the walker & Brandon RN assisting with his vent apparatus.

Dr. Lane, this week’s Attending Pulmonologist, rounded & informed us that Dr. McCurry, the Cardiothoracic Surgeon, does not want to proceed with Perry having the EMG of the diaphragms until more is learned about what they would do with the results. In other words, if Perry’s phrenic nerves are intact is he even eligible to have a diaphragmatic pacer placed?  Diaphragm pacing system, DPS, was developed in Cleveland by Dr. Raymond Onders & a team of biomedical engineers at Case Western Reserve University Hospital.  Christopher Reeves was the 2nd person implanted with the device.  For more information:

http://www.uhhospitals.org/case/services/surgery/publications/innovations-surgery/innovations-in-surgery-fall-2012/extending-the-lives-of-als-patients-with-a-diaphragm-pacing-system

http://www.synapsebiomedical.com/news/03_03_13.shtml

He was able to tolerate 66 minutes of trach capping with 4 liters of oxygen via nasal cannula from 1143-1249 remaining focused with his eyes closed throughout the entire capping.  No headache experienced post capping.  It takes him awhile to readjust to going back onto the vent which is said to be normal.  During the capping, we were visited by Dr. Serpil Erzurum, Chair of the Department of Pathobiology, who had requested Perry to donate his lungs for a research study.  She wanted to discuss with us in more detail that all of his organ tissues were all being utilized.  She did not realize when we had asked for pictures of his heart & lungs that we wanted to see the actual baffle & surgical corrections done on his original heart.  The pictures that were provided were of his ventricles so the atria & baffle were not photographed.  We are pleased to know that his organs will be able to provide valuable information that will benefit the lives of persons who have pulmonary hypertension in the future.  He was then visited by a nurse, Cami, who had taken care of Perry during his transplant work-up in October 2014.  She has received her Advanced Practice Nurse degree & is currently working in the Interventional Radiology Department, so she happened to be the person who came to assess his pigtail chest tube catheter today.  Amazing to see the full circle of how several people have been placed in our many paths along this journey.  In speaking further with her, I learned that she has taken care of a cardiac patient who had a diaphragmatic pacer placed.  I will be sure to let the physicians know of our conversation in hopes of proceeding with the EMG to allow Perry to have a higher quality of life if indeed his phrenic nerves are intact & diaphragmatic pacing is an option.

Shortly after capping he was able to nap.  Upon his brief next awakening, I asked to be able to go to the Transplant House for a shower, replenish my food stores here to which he agreed as long as I came back.  He fell back to sleep so I went home, showered, fell asleep for a nap, re-showered as my hair was a mess, replenish food stores, & returned by 6p.  He said he didn’t sleep very long while I was gone.  He almost immediately fell asleep & awakened as we received a FaceTime call @ 653p from Jim, Diane, Sam, Nick & Tonya.  We also got to meet Marjorie who is the home health nurse who will be caring for Sam while Char is undergoing hip replacement surgery & recovering herself.  Sam’s hip fracture sustained while he was here to see Perry had widened but according to follow up xray done today, it has not gotten worse so he’s to stay off of L leg for an additional 2 weeks.  Good news!!!!!  I then called Char to share our love & best wishes for a successful surgery & quick recovery & let her know we would be praying for her too!!!

Perry & I then communicated more regarding some of his thoughts & feelings.  He was able to get a lot said although without his voice.  I was able to reassure him of several things & asked that he please not worry about how this was “not fair” to me & about how we are going to be able to afford his care.  I don’t have the answers regarding the financial aspect, but reinforced that God takes care of the sparrow & that there are so many who have helped out already.  We are not to look back & have some of the regrets that he voiced about the decision to go through with the transplant as we could not predict what has happened but that instead we realize that where he is at now is not how it is going to be as we are still at the very beginning stages of his recovery & his current state is not the final outcome.  The last time we drove out of Cleveland he had said to me with tears streaming down his face, “I am not ever going to know what it is like to be healthy am I?” to which I said, I am so sorry honey...not here in this world, but someday in the next world you will.”  We knew that we would be leaving one set of problems for another completely different set of problems.  But his & His story aren't over, & there is so much more to come...we just have to work harder & be thankful for what we do have.  And we have to let God be in control & ask for Him to allow us to have  

We watched "The Voice" & he completed another trach capping from 944p-1008p (24 minutes) which was great as he was tired, & he had also received several of his night time medications which increase drowsiness.  All in a good day's work with so much to be thankful for each & every day.   Thank you everyone!!!!!

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted

Comments (3)

  • Carol Garard
    Carol Garard

    Praying for abundant blessing for all!

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    Denny always refers to Perry as “The Man of Steel”! How ironic that he may now get a DPS like Christopher Reeves had. Another day, another step forward. Thankful you got to stretch out in a real bed and get a shower. E-Hugs and always remember that you and Perry has so very many people keeping you in prayer at all times. Love, Joni & Ken

    4 years ago · Reply
  • Dianne Cook
    Dianne Cook

    Prayers for both of you. Sweet Perry is worried about how this all isn't fair to you...doesn't he know he married an angel?? Your positive and spiritual vision of how everything is going continues to amaze me. You seem to look at this life you are living as a way to show him every day how much you love him and also that each day you're with him is a gift from God considering the challenges he faces each and every day. I don't know what to do to help you but I think of you both every day and read every one of these posts and say my prayers. I'm going to talk to Perry one of these days when he's better and tell him the heat lightning story...we'll see if he remembers how young he was when he started being this Strong Italion Stallion that he is today. Love to you both, Dianne

    4 years ago · Reply