Perry had PT before I arrived & stood 3x for a few seconds with assistance & support. I saw Dean later in the afternoon & said Perry has had a very productive PT week. He gave me additional exercises for him (us) to do while he is on his side in bed to isolate & stretch the hip muscles as they are very tight & one of the reasons he's having trouble straightening up to stand tall.
He did trach collar breathing for 37 minutes from 1010-1047 & was able to be "capped" for the very first time for a couple of minutes during that time. He said "Hello" & said his ABCs all the way through from A 🍎to Z😴!!!! VERY HARD HARD WORK!!!!! Wasn't able to get that precious Kodak moment on video as my phone storage is full & iPad needed to be charged!!!! Darn!!! It was cute that he chose to say his ABCs & made me cry!!!!! He was having abdominal discomfort & bloating so was not able to continue with any additional trach collar breathing. He fell asleep by 1050a exhausted.
I met with the 🎶Music Therapist🎶 & made a secret special request to have her play guitar to some of our wedding songs for our 31st anniversary on October 6th👰🎩. I hope that will perk him up a little.
He had dialysis x4 hours starting @ 145p. I had been asked yesterday by Lora RN from CVICU if I would like to go to a "Ladies Night Out" to see a female comedian, Chonda Pierce at the church she attends @ 7p in Middleburg Heights. I had planned to leave around 415p to go to Costco for some groceries & also Walmart for miscellaneous items in a nearby area before the show but Perry requested that I not leave to go shopping as his dialysis progressed. After comforting & calming him, he agreed that it was okay that I go to the show & probably for a bite to eat afterward but requested that I return later tonight. I set up the computer so that he would be able to tune into the Cubs game @ 805p & asked Tracy RN to have his night shift RN please start it for him. It was a very nice evening of song & praise as well as laughter & healing tears shared with Lora, her mother, & a huge church filled with a multitude of women (& 4 men). The comedian is a new widow of 18 months, & so she is trying to return to smiling & laughing herself so she shared meaningful moments of sorrow in her presentation & in her gift of song as well. We then went to Applebee's for a late bite to eat after the show. It was all good for the soul!!!!
I returned to be with Perry @ 1215a, & he was awake & indicating that he was "scared" but he was not able to identify to me of what he was afraid. He denied having nightmares or bad dreams while I was gone. He asked me to stay with him through the night, so of course I did. He fell asleep after a bit of comforting. He awakened frequently many times during the night as well, so neither of us got much sleep. My sister gets just about as much sleep as I do as she sent me the following text @ 111a: “Praying for His peace. Isaiah 41:10 So do not fear, for I AM with you; do not be dismayed, for I AM your God. I will strengthen you and help you; I will uphold you with my righteous right hand. John 14:27 (NKJV) Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid. ❤”
Matt RT was on today (October 3) which he brings much confidence & encouragement to Perry. He wanted to wean him of the vent in small increments before starting Perry on trach collar breathing. Unfortunately, his abdominal distention seemed to be increasing again today so his formula feeding & trach collar breathing placed on hold & another KUB X-ray ordered by the Nurse Practitioner. Matt reverted him back to a higher pressure on the vent. I rested for short intervals between 9a-12p with frequent ups & downs out of my chair to comfort him & put him in & out of chair mode etc which helped to relieve some of the air from his stomach with long belches. I discussed with Steve, his day shift RN, to inquire with physicians about whether he could be able to chew Mylicon & increase it to 4 times a day instead of 2 times a day via his jejunostomy.
There was an increase his tremors to his mouth/tongue, hand/arms & feet throughout the day.
Perry wanted to try trach collar breathing after being able to release more burps throughout the afternoon. He was able to cough the most effectively he has ever done, & Matt RT suctioned he several times orally & via trach with a lot of mucus plugs & secretions suctioned. He was able to tolerate trach collar breathing as best he could go from 316p-~440p with nasal flaring & lots of accessory muscle involvement throughout the trial. Much significant praise was given!!!! He almost immediately fell asleep & remained asleep for several hours, but was awake to watch the last 2 innings of the Cubs game before falling back to sleep for the night. I hope to get a nod “yes” to be able to go to the Transplant House soon to rest this evening & get out of these clothes to return tomorrow morning & begin a new day!