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Posted 2015-12-08T07:28:00Z

December 7, 2015 - The Start of Week #20 in J5-5 CVICU

Perry slept fairly well during the night for Josh RN with need for intermittent oral suctioning.

Perry & I were awakened shortly before 7a to bright lights being turned on by 2 female physicians who came to look at Perry’s trach without introduction as to who they were, what service they were from & why they were doing what they were doing. Similar incidences happen all too frequent.  One of them stated he would need to have a bronchoscopy to look at his trachea. I informed them that he had undergone several recent bronchoscopies on 11/13, then the following Tuesday, Wednesday & Thursday, (a video bronchoscopy on that Thursday) as well as repeat bronchoscopies on following Tuesday & Friday, & last Thursday.  I also informed them that he is to undergo several procedures today.  I encouraged Perry to return to sleep & turned off the lights left on by the physicians after Josh RN & I discussed that he had not been informed by the physicians either.  Robin RN was his assigned day shift RN from 7a-11a.  Dr. Hanine Inaty representing Cardiothoracic team today rounded this AM & was informed that Perry has been having increased cloudy white oral & trach secretions Saturday & Sunday & was experiencing higher carbon dioxide levels while sleeping intermittently yesterday.  I also informed her that he had awakened last evening complaining of lower R flank area pain as well as side discomfort with breathing trials & had complained of frontal headache yesterday after trach collar breathing.  She was also informed that pre-transplant, his pneumonias would many times present with flank pain & that 99 degrees F was also a fever for him pre-transplant.  She ordered for a chest xray to be done this morning & will order secretion cultures to be obtained.

The Nephrology fellow rounded & it was discussed today’s dialysis & we discussed that perhaps the foley urinary catheter could be discontinued with Perry now being able to have a bit more dexterity & control of his hands with the Primidone decreasing his intentional tremors.  He will round with the attending later in the day.

Dean PT & Frankie began his PT session with Perry completing leg exercises & then dangling on the side of his bed.  He was then assisted to stand & walked with the EVA walker with the support assist of Dean & Frankie at his sides, Jack RT with the vent, & me following from behind with the chair.  Denise CT was beside me crying happy tears as she witnessed Perry walking.  He pushed through & was able to walk from his room to the frame entrance of the adjacent CVICU J5-6 (44 ft). Praises once again as he rested & slowed his breathing down.  This walk I do not recall a single trigger alarm from the vent from a higher respiratory rate.  Dean & Frankie provided backward chair transfer back to his room & then assisted to return to bed as he was exhausted.  

At 1000, Dr. McCurry, Perry’s Attending Cardiothoracic Surgeon actually rounded on Perry for the 1st time in a very long time of which I am aware & was accompanied by Dr. Jean-Pierre Yared, Cardiothoracic Anesthesia Intensivist, Dr. Inaty, & Jen Forney, J5-5 CVICU APN.  The chest x-ray is not showing an indication of pneumonia.  Condition updates were provided.  I informed them that with the trach collar trials completed last week there was only one episode that the trach cuff was not deflated as they had initially wanted trach collar breathing trials without trach cuff deflation & then the question had been posed as to when Perry was going to be given the opportunity to speak & Passy Muir valve was okayed.  The exact same things that I have been stating repeatedly on previous occasions to nurses, physicians, RTs, regarding Perry's excessive post nasal secretions pre-transplant & it taking hours to break it up every morning, having been on Allegra, Flonase, & Nasacort pre-transplant as well as Afrin when necessary to help break up excessively thick secretions that he would literally choke on & have stridors,…..   I reminded Dr. McCurry of a previous discussion we had had & that he himself had okayed for Perry to receive ice chips to help liquify & break up the secretions during our discussion as we swallow gallons of saliva daily; again reminding that every time the trach cuff is deflated Perry has an abundant amount of thick secretions that sit on top of the cuff…. & that in addition to those he has been having lots of secretions both orally suctioned & required to be suctioned from his trach this weekend as started on trach collar breathing.  It was decided that he could have ice chips to help liquefy secretions before trach collar breathing trials were done.  I finally received a definitive answer of Flonase as to which medication, either Flonase or Nasacort I should get from the pharmacy.  I also inquired once again as to getting the CCF nasal spray ordered as it has been since 7/26 that he has blown his nose.  Discussion as to whether or not a different trach was going to be placed relative to leakage occurred as well.  

The phrenic nerve stimulation conduction EMG was completed at bedside by a female technician, but we are still waiting to be informed of the results from Dr. Steven Shook.  Unfortunately, my question posed to Dr. Kotloff to inquire with Dr. Shook about as to whether an ultrasound could be done to localize the diaphragm instead of by just landmarks became a mute point as Dr. Shook did not perform the test.  During the phrenic nerve stimulation EMG, other nerves nearby also apparently become stimulated so he said "I felt that" & his arms would raise as a result of some of that nerve stimulation.

Rachael RN took over Perry’s care @ 11a.  Trach collar breathing was started by Matt RT @ 1118 on 40% oxygen @ 10 liters per min (LPM).  Matt RT obtained somewhat thick cloudy white trach secretions with a suction trap for cultures.  The Passy Muir valve (speaking valve) was then applied @ 1124.  Dr. Randall Lane, Pulmonology & other Pulmonology team members rounded & provided with an update.  It was decided that a repeat chest x ray would be done on Wednesday as currently no signs of pneumonia are present on the x ray from this morning.  Perry briefly spoke to Dr. Lane as very exhausted from the morning’s activities.  

Perry’s oxygen saturations decreased to 92% so the Passy Muir valve was removed @ 1135.  Matt RT suctioned his trach again.  Matt RT returned the PEEP from 7 cm H2O to 8 cm H2O as Perry was complaining of increased labored breathing.  At 1218, completed 60 minutes of trach collar breathing with complaint of having more difficult labored breathing & a frontal region headache.

Brent, J5-5 Assistant Nurse Manager & Rosslyn VanDenBossche, the Assistant Director of Nursing visited.  I've asked that she & I have a meeting with the Ombudsman at a later date to discuss concerns.  Brent came by later with a meeting for Wednesday @ 130p having been arranged with Ombudsman, Andrea Cupples, pending an email availability response from Rosslyn.   

We had some afternoon excitement as the dialysis equipment that had just been connected to the water faucet separated & sprayed out a very large amount of water all the way to the back of his room.  We know that in the event of a fire how to put it out rather quickly as 3 of us sprung into action. Dialysis was started @ 2p with the plan to remove ½-1 liter of fluid.  

Dr. Emilio Poggio, Nephrologist, rounded with the Nephrology Fellow.  It was ordered that the foley urinary catheter be removed today.  Perry was asleep & will be happy to receive that news, & it will be one less potential source of infection.

Perry slept through a majority of his dialysis session.  His foley was removed & shortly was able to release a very small quantity of urine into a urinal.  Compared to pre-transplant & having had excessively large volumes of urine from all of his diuretics, it was an adjustment to see such a small quantity collected.  Dialysis ended @ 6p with 1 liter of fluid removed.

The next trach collar breathing trial was started @ 638p by Matt RT on 40% oxygen @ 10 LPM with the need for suction orally & from his trach with passage of red rubber catheter x 2 with yellow mucous particulate on outside of the catheter & a speck of blood noted in the suction catheter but removed @ 705p as Perry was getting very tired.  

Rachael RN was his assigned evening nurse with Brian RT & Jean RT alternating his respiratory care at times.  He has had a gelatinous stool this evening & released some urine while on the bedpan.  Perry has been a bit fidgety not finding a comfortable sleeping position tonight so he has been awakening rather frequently.  Melatonin was requested to facilitate sleep.  It was an overall an excellent day with hopes that another infection is not brewing.  It is so wonderful to also see & hear staff members congratulate Perry on his significant accomplishments & progress that has occurred during the last week.  He too I am hoping is starting to FEEL that he has made great & miraculous strides.  Keep those prayers coming for God is answering them!!!!  I had many happy tears today!!!!



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Comments (4)

  • Darlene

    We are so happy for your happy tears..Perry and Family so proud of you all. God Bless the care you are getting and God is with every moment of the day and night.Praying.Harvey and Darlene Strausbaugh

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

    How great to be Walkng the Walk, and Talking the Talk! The flooding brought a smile to my face, as I immediately thought of Noah, think you could use my carpenter skills in constructing an Ark? If room next care package will contain a pool float! What a wonderous thing laughter and hope! Thank you God! We pray CC ears to hear you Misty! Love!

    4 years ago · Reply
  • Mary Brewton
    Mary Brewton

    I will update our church prayer list as a couple from the congregation asked me about Perry the other day. They have been praying for him along with many others, and we will continue to do so. Thankful for answered prayers in Perry's improvement!

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    Happy tears are such wonderful tears and clean out our tear ducts! I cried some too. You are the one living this journey step by step along side of Perry but as one who awaits your posts each day; I can tell you, your faithful readers feel like we are there along side of you at least in spirit. So I pray you feel all of us holding on to you. You and Perry are totally covered in a blanket of prayer each and every day. SO thankful for all the wonderful medical inventions that allow Perry to speak and walk and keep moving, getting stronger until someday, he will be walking on his own. I hope you are at least going outside and walking around and getting some fresh air daily. We do worry about you too! E-Hugs and lots of prayers always. Love, Joni & Ken

    4 years ago · Reply