Perry's non-verbal communication last night indicated perhaps a bit of anxiety with an expression of the need for us to stay with him a until he calmly fell asleep ~1230a. Perry did not have any particular reported issues during the night. My sister & I had a chance to sleep a little later this morning & arrived ~1115a. Upon our arrival, Singh, his day shift nurse, told us that he had been perky & alert this morn & had nodded "yes" when Singh asked if he remembered him. Singh had taken care of him prior to the events on 8/5, so that too was a promising sign of short term memory. Joanna was here today as many of the nurses who were working nights do a 6 wk rotation of night shifts & then day shifts. Joanna also told us how perky & alert he was & that he had definitely winked at her 😉 too!!! Prior to our arrival, two chest tubes were removed from his left chest & 1 chest tube from his right chest. He had done very well during his physical therapy session. Another stool sample was sent for occult blood as the first one sent was not a sufficient sample. His formula feeding amount had been increased from 60 to 75 mL/hr. The Respiratory Therapist had switched him to a CPAP (continuous positive airway pressure) vent setting & said if he continues to do well, he may be able to start to slowly weaning off the vent in the near future. He had a healing touch session while I received a relaxing chair massage from the Healing Services team. He nodded "yes" to listening to "the blues" a favored music genre & was able to rest calmly. On occasion he awakened with a panic/anxiety episode or perhaps hallucinations or possibly Propofol withdrawal signs/symptoms with an increased respiratory rate & "guppy" type breathing, so I held his hand & reminded him that he was on CPAP vent mode as well as possible withdrawal side effects, & eventually he was able to calm down & return back to sleep. He periodically would awaken & look over to see that I was beside him. The Neurology physician came by & filled us in on their current plan which is to continue with the EEG for possibly 2 more days. She stated she is pleased with the progression of his responsiveness & the lessening of myoclonus (muscle jerking/twitching) with the increased dosage of Klonopin, Keppra, & Vimpat. Music Therapy was underway in a room near his with guitar playing. Singh & Summer (another nurse who has cared for him) were dancing & snapping their fingers & talking to him to see if he liked the music & again he nodded "yes." Please keep up with the prayers & the Novena. God is working here in Perry's life, my life, his healthcare team, & the many I've been able to be with in the waiting room. I've seen lots of turnover of visitors & heard many shared stories. I learned also that Summer is on the Transplant Team & flies out with the team to retrieve organs & patients. I told her she will have to share in more detail with Perry that part of transplant process & how disappointed he was not having been leer-jetted here ✈️!!! One of his Cardiothoracic team physicians (that I had been a bit stern with yesterday when he continued to speak about Perry in 3rd person & did not consider Perry being responsive enough to be spoken to) today looked directly at Perry, touched Perry, & talked directly to Perry regarding his improvements. I thanked him as I shook his hand (a lesson learned with God's help that the patient is always & should be the central focus & must be included in the plan even if he/she may not be responsive!!!! Thank be to God - for that & everything else made my day joyous!!! Nephrology (kidney) team Is pleased with his progress lab & with the decrease in his swelling & that he's has been making urine - ~100 mL w urine straight cath yesterday & 125 mL & 175 mL on previous straight caths (a straight cath means that the catheter is inserted, drains the urine & then is removed immediately rather than it being left in (indwelling cath) which can increase infection. In a few days they are considering switching him to a different form of dialysis. His corpak NG tube that he gets his feedings from once again migrated out of place so the formula going in was being suctioned right back out as well as medications being given by NG tube. He began having more shaking tremors, mouth/jaw/tongue movements like he had initially when in Room 14 - so the phosphorus & Klonopin & Protonix were not getting absorbed but instead suctioned back out of his stomach. Since he has the other tube in his other nostril to suction stomach contents & excess air, the tip of it may have been getting ahold of the NG feeding tube. IV Ativan was given to help with the spasticity & then he had another abdominal KUB X-ray which confirmed the need to pull out the feeding tube & reinsert it 😕. Another abdominal KUB X-ray confirmed proper placement of the reinserted NG tube. Unfortunately he was quite uncomfortable as many attempts were made to go up both nostrils to hook & loop a tie to hold the NG tube in place. Finally after much discomfort & wiped his tears, his NG was able to be tied with with the retrieved string & he was able to get back to sleep. He has been able to rest most of the evening & now into the night. Lights have been lowered & he was just repositioned. Since there is a delay in the Cubs vs Tigers game, I am preparing him for his night tuck in & a good night kiss (well many kisses) - earlier this evening, he gave me 3 Vaseline kisses!
For those requesting his current address for cards, it is:
Cleveland Clinic Heart & Vascular Institute
9500 Euclid Avenue J5-5 CVICU
Attention: Perry DiGiovanni
Room 3 Cleveland, OH 44195
Now, let's Go Cubs!!!!
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!