Night shift update call from Cat RN was that Perry had gotten some rest with pain medication but had awakened @ 3a. He had tried to communicate to let her know that he wanted to have his TV turned on & after she figured it out, she obliged with his request.
Upon my arrival, Perry was undergoing his first Occupational Therapy session with arm & leg strengthening exercises. He worked hard during the session & ran out of steam. I will be assisting him with all of the same exercises several times throughout the day in order for him to gain muscle strength, tone, & more controlled movement of his hands/feet & arms/legs. Neurology plans to reduce/discontinue the anti-seizure medications & hopefully be able to provide alternatives that may assist with the involuntary shaking/tremors of his extremities. I had been repeatedly requesting Speech Therapy as he tires quickly using up his energy stores & becomes frustrated attempting to communicate his needs, wants, pain, feelings via mouthing of words/sentences, facial expressions, & signaling gestures while experiencing the involuntary shaking/tremors. Lip reading is a learned skill & even though both my sister & I are somewhat versed in it due to our hearing impairments, Perry just doesn’t have the energy to repeat 4-5 times what he’s trying to communicate. With both Occupational Therapy & Speech Therapy involved in his care, his depression will hopefully be significantly lifted, as he can begin to participate more fully in his recovery, healing, & daily living activities. Give him a challenge, & he will do whatever is necessary in order to succeed. That’s what Perry has had to do all of his life. Adaptive tools & resources for communication & movement are beneficial to living life & can help provide a “voice.” We are heading in the right direction!!!
This morning, I needed to inform Perry about information that had been shared with me by one of the General Surgery physicians who had called me Tuesday evening after Perry’s jejunostomy procedure. He informed me that during the procedure his liver was visualized with the presence of lots of scar tissue (an expected finding due to his previous surgeries) & cirrhosis (inflammation) with increased fibrosis present, so a liver tissue biopsy was taken & that it would take 4 days before results would be available. As the day progressed, the Lung Transplant attending physician informed us that there was not cirrhosis or liver cancer according to biopsy results. The Ileus & possibly biliary stasis are present. Perry’s abdomen was quite distended so another KUB xray was done with lots of "gas" identified. GI/Hepatology physicians consulted & will now be involved in Perry’s care as well. At present, we’re being told that the liver issues are related to effects of his pre-existing cardiac condition, congestive heart failure, & the cardiac arrest event. Another chest tube was removed today so he's down to one now. He was able to be up in the chair toward the evening, napped & upon return to bed he continued to rest/sleep into the night. TPN was discontinued @ 10p.
I adapted a quote from the movie Brian's Song for one of Perry’s Christmas gifts last year & included it with his gift of the movie. "Perry, you too have a heart of a giant & a rare form of courage that allows you to kid yourself & your opponents, & a mental attitude that makes me proud to have a friend who spells out the word courage 24 hrs a day, every day of your life!" We are fortunate that both of his hearts have been those of a giant!!!! Thank you Perry for asking me out on our 1st date 37 years ago!!!!