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Posted 2015-09-05T04:04:00Z

September 4, 2015 - The Chance to Speak

Todd RN called & informed me that Perry did have several toss & turns as well as hot/cold spells throughout the night otherwise it was another uneventful night. Jason RN & Jenn RN (orientee) were assigned to Perry on day shift. I arrived at 740a & greeted with an "I love you!" He then slept intermittently. At 0958, Perry was able to rid a huge amount of thick whitish cream mucous with trach cuff deflation & weak cough. Bill RT then allowed him to say a few words on 2 different occasions. He repeated Nick’s name several times on the first try & said "I love you" on his 2nd try. I got his first try on video but not his 2nd due to having used all my phone storage. He was placed on trach collar breathing which was a lot of work back to back within a very short period of time. He became sweaty & was not able to tolerate trach collar breathing but about 30 minutes due to increased labored abdominal breathing, nasal flaring & oxygen saturation decrease to 86%. He was totally exhausted & slept for about 4 hrs straight. Dr. Valapour visited & plans to keep his Prograf dosage the same today as the Prograf lab values for several of the patients were all rather odd today so she will make adjustments based upon lab values tomorrow. She planned to also follow up with Neurology as his twitching this morning was significantly increased & continued to be more significant throughout all of today. The Nephrology Dr was pleased with his dialysis results from yesterday but anticipates that Perry will need to continue on intermittent dialysis for a bit longer timeframe. He plans to give Perry Lasix IV & see if he is able to wait & undergo dialysis on Monday. Dr. McCurry (Cardiothoracic surgeon) was in & pleased with his progression & trying to emphasize Perry that each day he's making progress. A swallow study was inquired about with Dr. McCurry by the RT & an order for such was written. Caution to avoid an aspiration & thus a potential lung pneumonia are serious risks. If he passes the basic swallow study, Dr. McCurry plans to allow for very small quantities of ice chips to be given. Dean came in for PT session @ 1015 but Perry was in a deep sleep so rescheduled @ 1130, & then again @ 1p as Perry continued to sleep soundly. He did well during his session which ended & 115p with an assisted pivot into the chair by Dean with Jenn RN & me helping as well. A nap was again immediate. Kimberly OT saw Perry for upper extremity range of motion exercises & reaching exercises with his L arm/hand & then @ 320p Lauren, the Speech Therapist, was in to see Perry to complete a preliminary swallow study. He was able to demonstrate mouth & tongue movements used in swallowing. Green food coloring ice chips & water via spoon & then by straw were given as well as green food colors vanilla pudding to assess if his oral intake is ending up down his airway (trachea) & into his lungs. Upon completion the trach cuff is deflated & trachea suctioned - because Perry has been getting rid of huge amounts of mucous with cuff deflation he had green stained mucous but once the cuff was reinflated & trach suctioned there was no green food colored secretions so it was determined that he passed the preliminary study. He will undergo a more thorough barium swallow study also known as a videofluoroscopic swallowing study, or VFSS at a later date. More rest followed & @ 420p, he was lifted back into bed. His abdomen remained very distended but he was having frequent releases of gas so the NG tube was not passed today. His formula mL/hr was increased to 65 mL/hr relative to the results of the Metabolic Cart. Unfortunately Perry had increased body twitching the entire day, so he was very frustrated & was experiencing bladder spasms, so he required lots of TLC today & this evening. He eventually settled down with warm heat packs with weight of a 500 mL IV bag, abdominal massage, & being allowed to vent his frustrations & hitting a lap pillow. He made it through it, exhausted & back to sleep by 10p. Tomorrow will be another day! And we are both looking forward to Ryan coming to see us! Wishing everyone a safe & fulfilling Labor Day weekend!

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Comments (3)

  • Joni DeBusk
    Joni DeBusk

    PHEW! Most of the post is too technical for me. Sounds like someone is in doing something to Perry all day long! At least his days must fly by with all the activity. I do know about swallow testing and using colored liquid/soft foods to determine where it is going. Thankful Perry's seems to be going in the right direction. After the videoflouoroscopic test, hopefully soft diet will be introduced and Perry will begin to EAT! I know that is a huge milestone he is looking forward to. He really took out his frustrations by hitting his lap pillow. WOW, I thought those where to help with coughing. Never thought about punching one. That's pretty cool. Doubly hard for a strong willed person like Perry to be so confined for so long. He just doesn't realize that he is doing great and everyone (professionals not just family/friends) are so proud of him. PUNCH that pillow - that's probably a good PT exercise. Lots of prayers! E--Hugs! Love, Joni & Ken

    4 years ago · Reply
  • Denise Witt
    Denise Witt

    Perry & Misty, Your Family, Friends & Fans at Witt's End are lifting you in prayers & cheering each & every victory. You are God's best. 💗 May He continue to heal, bless & encourage you. (Quoting from Ephesians 4:12.. "A cord of three strands is not easily broken.") We know you can go the distance. We are SO grateful for the excellent care & dedicated attention you receive on J55! We thank God for them & you! You all have such a testimony! 'Longing to see you again & praying to make it so soon.... With much love & many blessings from the Northern VA quadrant of Team Perry ~Garry & Denise, Garrett & Taylor, Gavin & Rachel, isaac & Angie & Nathanael Proverbs 3:5-6(KJV) "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths."

    4 years ago · Reply
  • Darlene

    You can do this perry. Your doing great! Baby steps perry. My love is with you always. Love, kari Rhodes (Noah's mom) if you want to text or talk my number is 4404130965. If you text me I can send you pictures and different things. Words of encouragement (hugs)

    4 years ago · Reply