Tracy RN called with report that Perry had slept well during the night, & his labs were somewhat stable within the trends for Perry. I spoke with Dean PT just before entering the CVICU. He informed me that he had met with Perry, & that he worked hard with 2 assisted brief stands & then stand to pivot into recliner chair. He was very drowsy when I entered his room & the Pulmonologist & resident were in to see him. I inquired about his chest CT scan & was informed the L lung fluid collection was showing an improvement but there are several areas of consolidation present in both lungs that will require effective coughing to lessen them. I asked if he would be able to use his chest vest to help loosen the consolidation to which he agreed may be helpful. I again expressed concern regarding Perry's persistent sleep & tremor/twitches that have increased over the last 4-5 days that he has now also been experiencing while asleep, & that Perry has an increase of same when trying to focus & ~1-2 hours prior to when his Keppra, Klonopin, & Depakene are due to be given. They plan to notify Neurology to consult again. Perry then began to sleep. Bill RT capped his trach @ 0950 with Perry being able to tolerate 20 minutes with lots of praise & encouragement. At 1040, he was returned to bed & fell asleep rather immediately. Dr. Koval from Infectious Disease visited & I informed her of the increase of sleeping that has been present now for last 16 days that despite his therapies has remained a very prevalent part of his day. Dr. Poggio, Nephrology, informed me that he will need to have dialysis tomorrow. During the afternoon, Kim OT & I worked with Perry to do hand, wrist & arm exercises with 1# weights as he kept his eyes closed the entire time & was pushing through to complete 2 sets of each exercise. OT was followed by more sleep.
Perry had agreed to have his extracted lungs utilized for in a research study for Pulmonary Hypertension with researcher & the Department of Pathobiology Chair, Dr. Serpil Erzurum, & Jackie Sharp. We had asked if pictures could be taken of Perry's birth heart & lungs so that we could have a visual. Pictures of his whole heart & lungs, dissections, & microscopic portions of his lungs were delivered to me by the Jackie Sharp affiliated with the research study. Dr. Serpil Erzurum plans to stop by to see us in the near future.
Perry remained asleep until ~345p. He has continued to experience upper & lower extremity tremors today while sleeping as well as when awake. Starting at 353p, he did his best to tolerate a 2nd round of trach capping. Trying to motivate him I asked if he was able to give me an extra 4 minutes beyond when he had hand signaled that he could not do anymore. He met the challenge & was able to go for a total of 22 minutes being praised & encouraged by me, mom, Cat RN, & Bill RT. He once again fell almost immediately back to sleep. He was able to stay aroused for a brief visit by a dear gentleman who had been a former patient during the initial phases of Perry's transplant & his lovely wife who we plan to stay connected to for years to come. Shortly after their visit, Perry returned to sleep & slept until ~845p. While receiving his evening breathing treatments, he began to experience an significant increase in oral secretions & coughing & continued to need frequent oral suctioning ~1015p. Tracy RN will be with him throughout the night.
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 his 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!