Awake upon my arrival @ 1145a; he is now nodding both "yes" & "no" to questions today; has remained off the Propofol (sedative) & the Levophed (Norepinephrine for BP) since yesterday; has Kirstin as his nurse since 11a - she was on the day of the 5th & saw as a bystander & helper all that he had been through that day so aware of just how special he is!!!! The physical therapist was in so he was providing some gentle PROM (passive range of motion) to his arms, shoulders, hands, feet, ankles, & legs - & Perry was able to assist & resist against the pulls during the exercises - so awesome!!!!; he tired intermittently but was a definite participant AND the best news of all - He winked at me 3 times 😉😉😉 - it wasn't that he had a 🐝 in his eye either - he winked when I asked him if he loved me!!!!! I'm in 7th Heaven. I tried to get it on video but he zonked out from working so hard getting practice for his golf swing ⛳️ & practice shooting🔫 for when he becomes Olivia's back-up officer on Law & Order or the next Die Hard, True Lies, & for when he gets casted as the next James Bond!!!!!! He also nodded yes when I asked if he believed me that he was doing awesome!!!!! [...]
His special ordered sand bed arrived a day early - so we will pretend he's on a beach in.....well all sorts of beautiful beach locations. He slept all of the day except for a few brief episodes of sudden eye openings & alertness. He continued to eye track when he was awake. He was still off the Propofol when I left @ 1015p & did very well with the myoclonus starting to occur about 20 minutes before his evening dose of Klonopin & was able to return back to sleep by 1005p. My sister will be driving to Cleveland tomorrow to sit with me at his bedside. She will be able to hold Perry's hand at intervals, so I can begin to get going on the many things I need to be accomplishing via computer. A special thank you to our sons & Perry's brothers, Nick & Jim, for all of their assistance with getting mail to us, setting up accounts, & taking over the bill paying responsibilities in the interim of the last 3 weeks. An enormous thank you to all of those who have donated to Perry's Transplant Fund, for gifts received, & for sending special treats to the staff caring for Perry & other patients in the CVICU, for the cards with comforting sentiments, & for being with us on this journey. Wishing everyone a good night's rest & the start to a week full of many blessings. We cannot thank everyone enough for the all of the continued prayers, love, & support!!! Monday, August 17 starts week 3 post-transplant. Please continue to pray for Perry's donor & the donor's family & friends.
Had uneventful night. This AM had BM (light brown) sent to lab to check for occult blood; gastric suctioned secretions this morning were consistent with formula which had been stopped since ~1115a yesterday, so an abdominal KUB (kidney, ureter & bladder) X-ray was done to identify proper placement of feeding tube as well. Propofol (sedative) has been off since early this morning. He had been eye tracking to RN & was much more alert. An order to increase Klonopin to lessen the extent of the myoclonus was obtained, & he has been able to have body calmness & remain off the Propofol thus far - yay!!! I went to Holy Rosary Church in Little Italy & said the Novena to St. Anthony. It's within walking distance to the Transplant House of Cleveland. The Feast of the Assumption of Mary is underway, so I took advantage of feeling some sunshine & took in some really great smells with all of the food stands, got Italian ice for the staff at Corbo's Italian Bakery & of course had to get a sesame cookie like Grandma Martha used to make, & also brought some escarole & a chicken cutlet with gravy on fresh Italian bread from Angelo's Nido Italia - anticipation!!! Angelo's is where Perry & I went during one of our October anniversary trips to Cleveland. Angelo is who also asked his brother Nick for a picture of Perry, so it could be placed on the Blessed Mary's statue yesterday for the Feast of the Assumption of Mary. As walking into unit, Matt (RT) said Perry had been really alert & was tracking him really well & he was so thrilled to see that. Upon my arrival, ~1p, he was sleeping. His nurse gave me some additional updates since our phone conversation this morning. His hemoglobin has been staying in the 8's today, his platelets @ 135,000 (had been as low as 20,000 in recent days) & the majority of all other labs within normal limits. The feeding tube needed to be placed further down beyond his stomach according to X-ray. The sand bed had to be ordered special from Hill Rom, the bed manufacturer so it is anticipated to arrive Monday. He's been getting turned every 2 hrs today & still off the Propofol & the norepinephrine has been off too - systolic BP in the 100-110s, HR in the 80s. He's awakened a few times & he's definitely tracking & also seeming to track activity at the Nurse's Station too. Matt stopped by & he opened his eyes & looked directly at Matt as he talked to him & also nodded his head "yes" several times when he asked if he remembered him -ABSOLUTELY FANTASTIC as short term memory indication!!!!! At times, he's been drawing his R hand to his L chest, grimacing with swallows & waking up on occasion & looking right @/& for me. He's been able to nod "yes" since I've been here twice to indicate he's having pain so he's received Fentanyl bolus as needed. Formula feeding were resumed at 2p @ 60 ml/hr (=2 oz/hr) which had been off since ~1115a yesterday to rest his stomach & decrease irritation etc related to the bleeding yesterday. Since feeding was started he's been having yellow green bile - a welcomed sight. He has been sleeping calmly.
Yesterday morning, August 14th, I was informed that Perry had had an uneventful night & that his heart & lungs remained status quo. He was on Propofol @ 15 & was calmly sleeping upon our initial arrival. The Wound Care RN came to see if he had gotten the sand mattress which was/is still pending. I feel significantly less anxious as one of the residents demonstrated to me the moisture I had been feeling to his left chest was related to a chest tube leak. He clamped off the chest tube briefly to demonstrate that the moisture feeling would dissipate - which it did. An MRI is still in the works but he has not been stable enough to go for it. The remainder of the day Ryan & I would notice eye tracking to us & at times what appeared to be emotional facial expressions. Ry had to leave to get to the airport around 730p however his flight was delayed due to none other than "heat lightning" in Chicago. Shortly after 11p last night, Perry was moved to a larger room (Bed 3) across from the Nurse's Station as it had become available. His systolic BP dropped to 70-90s & his body twitching (myoclonus) continued for quite some time. I departed from his bedside about 2a to take a rest in the waiting room. This morning, August 15th, I noticed that Perry was having coffee ground colored gastric secretions from his NG (nasogastric) tube & at ~1035a thin watery red blood was noted - a new development. The NG tube was removed from suction & clamped. His formula feeding was stopped. An anesthesiologist & surgeon stopped by & changed his GERD (gastroesophageal reflux disease) medication was changed to Protonix. Blood was drawn & his hemoglobin was 8.7 which was ok compared to previous counts. I had been noticing increased swallows followed by facial grimaces perhaps indicating pain. Surgeon came by -saying "I'm not surprised he's having coffee ground secretions as he may have some stomach inflammation in his stomach & irritation from the feeding tube & NG tube. He is not able to have a scope to determine the source of the bleeding. Will continue to monitor him & give blood if necessary. His Propofol got reduced during the day to 18 having started at 20 in AM & was back up to 20 when I left at 930p. I'm exhausted so heading to bed. Wishing Perry & all of you a good night's sleep. I am sooo far behind in correspondence & thank yous to everyone so please forgive me.
Earlier this afternoon, as the swelling in his hands had significantly reduced, I placed his wedding ring on him & held Doreen's Mother Mary medallion & Four Way Cross in the palm of his left hand as we (Perry & Misty) listened to music. In order to feel the beat of the music via vibration, I placed my cell phone inside of a pillowcase on his chest. Not only could he feel the vibration of the music but he also may have felt the many, many incoming text message notifications, emails, & alarms on my phone. I was also trying to take a reprieve.[...]
Last night Perry was having some labored breathing while Misty and Michael were able to be in the room. Misty told the nurse and the Respiratory Therapist the laboring being witnessed was not normal, so they suctioned and also used ambu bag to get a mucous plug out. Once removed, his breathing was not as labored. Misty also reported to the nurse that his left lung sounded a bit moist just by feeling his chest and that has continued through today. They are now intermittently suctioning his trach to continue to try to keep his airway clear.[...]
Perry was weaned down to 0 on the propofol for approximately 1.5 hours. We believe we were getting some eye blinks, double eye blinks, eye closing, minimal eye tracking here and there on command as well as a tear, but it is very hard to decipher commanded vs. twitches. We believe he is working very hard and the nurse agrees she has seen some command following, but did say "I don't know if it is just me, but I am seeing a little something" (she's in the same boat as us).[...]
At noon the anesthesiologist got word from the neurology team that they haven't seen any seizure activity so they are now weaning him off of the propofol again. They first dropped from 40 mcg/kg/min to 20 mcg/kg/min, and there were minimal changes to his response/reactions. After a half hour (12:30 PM ET), they dropped his level down to 10 mcg/kg/min and the goal is to wean him completely off. Michael was in the room for the first two step downs and now Ryan and Misty are in there.[...]
They began lowering his Propofol to 40 mcg/kg/min (from 50) to begin the weaning process. Perry was exhibiting more frequent head turns, twitching from all extremities, his eyes were partially open and he continued to have mouth/jaw movements. Based on this, the neurology team now recommends to increase his dosage of Vimpat (anti-seizure medication) and keep the Propofol at 40 mcg/kg/min. They will continue with video EEG & remote observation and want to give at least another 12 hrs before next plan is established based upon findings with the above plan.[...]
Last night was uneventful and his vitals were stable. We heard from the neurologist that their recommendation was to keep Perry sedated for 48 hours without any seizures. He is on 2 anti-seizure medications and 1 sedative that assist with with seizures currently. 48 hours would be 6 PM ET today without any seizures. However, they would prefer to start weaning him off of the sedative now so he can have the entire day staff available to monitor him and we can have most of the specialists in the hospital at a moment's notice should any complications/concerns arise. Weaning off the sedative can take a few hours.[...]