Perry once again remained awake until ~3a according to Erica RN with another uneventful night. His hemoglobin has remained in the 7.8-7.9 range during the last 2 days so no blood transfusions of late. He was started on CPAP on vent @ 7a & was able to tolerate it until 7p this evening.
Perry requested Chris, RT to assist him to help get rid of a very large amount of built up thick yellow cream mucous by deflating his trach cuff again this morning. Although he has brought up a significant amount of mucous, RT must be very cautious with this technique as Perry could aspirate on oral secretions which could lead to an aspiration pneumonia. Dr. Maryam Valapour, the Director of Lung Transplant Outcomes ordered for the anti-rejection medication Prograf to be increased from 1.5 mg to 2 mg to move toward a more therapeutic level.
His PT session consisted of lower extremity exercises with additional Shuttle Mini Press double leg upward pushes. Dean was made aware of Perry’s R knee swelling that I noted yesterday & that prior to his transplant he was experiencing significant R knee swelling with basic leg exercises relative to his Rheumatoid Arthritis. I also mentioned the knee swelling to Dr. Valapour & requested Rheumatology be consulted as he was being seen by 2 different Rheumatology specialists @ Cleveland Clinic pre-transplant. Additional R knee swelling was present this afternoon/evening. Perry tolerated being assisted to an upright sit at the edge of the bed with improved head lift as well as head & trunk control. He completed additional leg extension/flexion exercises. Like the Energizer Bunny, he “keeps on going" above & beyond. It is terrific that he remains determined, but it’s not so good because he needs to conserve his energy & not add more stress to his body. Dean plans to schedule Perry's PT session @ 10a daily for consistency. He was then transferred with a sitting pivot into the chair by Dean, another rehab therapist @ 1030a & fell asleep almost immediately with head nods as he was so exhausted.
Dr. Christine Koval, Infectious Diseases, has been pleased with Perry's progression status post the systemic yeast infection. She plans to continue with Micafungin (Mycamine) 100 mg IV every 24 hrs. She informed me that yeast was also found preliminarily in the fluid (ascites) removed from his abdomen during insertion of the jejunostomy, but fortunately yeast did not grow on the culture so it may have been dead yeast. She called Perry the "Miracle Man" as did another physician earlier in the day.
He continued to experience back pain & pain to his tailbone bedsore while in the chair so his positioning was varied frequently & pain medication was administered @ ~1205p. It is imperative that he be up in the chair for longer intervals daily to aid in strengthening his chest muscles so that he can be weaned off the vent sooner & to decrease his abdominal distension. He briefly opened his eyes when our Social Worker, Beth, that we've met with since 2013 came for a visit & update. He remained asleep until ~3p & was then transferred by the lift team back into bed. He slept throughout the evening with very brief episodes of arousal. The Metabolic Cart was not able to be completed today due to limited RT staff, so I am hoping it will be done tomorrow as the test will determine what his actual nutritional caloric needs are based upon the demands of his body. He barely had enough energy to nod his head to answer questions throughout the day. I asked Jay RN to give anti-anxiety medication or Benadryl to assist with more restful sleep throughout the night.
Please continue prayers that his nutritional needs be met, entire body muscle atrophy be improved, energy & strength be gained, ability to be off vent for longer intervals daily, more effective communication methods be provided & implemented, his spirits be lifted, lessening of tremors to his extremities, & improved restful & less anxious sleep during the night. Please know that we appreciate all prayers continuing to be said & for all of the donations made to date. Please forgive my delay in thanking each of you individually for your generosity as it has not gone unnoticed. May God bless each of you with good health & a happy tomorrow.
We have established a designated fund (“Perry’s Transplant Fund”) for those of you wishing to provide financial assistance to cover Perry’s enormous and mounting medical, housing and rehabilitation expenses. We appreciate everyone’s concern and generosity in this time of great need. Any amount that you can give would be a huge support for Perry and our family. Every little bit helps! You can make credit card donations on the "Donations" tab above. Checks can be made payable to “Perry’s Transplant Fund” and can be sent to the following address :
Perry's Transplant Fund c/o Nick J. DiGiovanni
22050 Coriander Lane Frankfort, IL 60423
Thank you all again for your prayers and continued support to this point and all future well wishes to come. Perry and his entire family truly have a tremendous support group!