August 26, 2015 - After 37 Years We're Still Going Strong With A Little (Actually A Lot) Help from Our Friends & Family
Happy 37 Year Anniversary[...]
Happy 37 Year Anniversary[...]
Perry's surgery went well, & we were able to return to his room about 530p. He has been resting comfortably with IV pain medication given twice so far. Denise & I are going to be leaving soon so that we may return bright & early tomorrow morning!!! He's been made aware that the Cubs are up 6-0 @ the bottom of the 6th inning!![...]
Becky RN called with update that Perry slept well, had a few stools (much needed before next surgery), & had requested if he could have an ice chip so she was going inquire with his Dr. for the order. I received call @ 957a as getting ready to come & see my Prince that there was a cancellation on today's surgery schedule, & so my consent was given for him to have jejunostomy surgery this afternoon. Upon my arrival, I learned that another chest tube had been removed this morning, so even more progression as now down to 2 Blakes which will increase his comfort with positioning in bed & when in chair as well as his mobility. He's been extremely depressed ("extremely" is not even the right degree of measure), has been confused as to time & place intermittently, & he has remained oriented to self. & this morning when I asked him who I was & what my name was he answered, "Misty Barker." He repeatedly knew that his sons were Michael & Ryan but was not able to tell me his brothers' names. When I showed him Doreen's picture & I asked what his mom's name was he said "Mommy" & eventually he said Doreen Massetti. The Pulmonologist was at his bedside at the time & we agreed the present difficulties most likely are brain processing delays due to lack of sleep, food, energy & ICU sensory overload. Later in the morning, we were able to FaceTime with Nick, Sam & Char & he recognized them, mouthed who they were & "I love you" to each of them & also drew his hand up to wave with assistance. He has been sleeping well this morning & afternoon, arousing briefly with attempts to move his legs, arms & trying to turn himself. Wanting to know the time for his surgery. Once he's able to receive much needed nourishment, he will be progressing. We got a mirror yesterday so I can tip it so he can see the blue sky which in time will help too to be connected to the outside world. Many are asking - I am doing very well. We (Denise & I) were able to get 9 hrs of sleep last night. I'm eating, maybe not on time, but at least eating healthy, showering daily, & I even shaved my legs yesterday too!!!! Went to yoga class yesterday offered for pts & family members of transplant pts which I had not been able to go to for the last 3 wks. He was taken down to surgery ~310p & it will be ~2-4 hours. I got to see him & send him off with a kiss this time around. Will anxiously be awaiting his return.[...]
Cat, last night's shift RN, reported that Perry remained restless & was up until 5a. I received call from Dr @ 733a to receive consent to place femoral arterial line in his L thigh as yesterday with all of his fidgeting & frequent movements the L radial arterial line was compromised. Perry is also L handed so it was very difficult for him to avoid using his L hand/wrist. The tunneled access line ended up being placed in his R femoral artery on his R upper outer thigh. The line was placed so that TPN (Total Parenteral Nutrition) could be given & later for use for additional medications & monitoring. Due to Perry's previous systemic yeast infection, TPN is not the preferred feeding method, although not having had nourishment for several days, it was decided that until he has the jejunostomy surgery on Wednesday that TPN should be started. Because the TPN solution is specially made for each patient's needs, it will not be available until 10p this evening. He began today's 3 hour dialysis @ 1035a. After dialysis, two chest tubes were removed without complications, received a shampoo & bath & then had Physical Therapy. The Physical Therapist was impressed with Perry's arm & leg strength & is planning to allow Perry to sit on the edge of the bed & try standing in the near future. He was transferred to sit up in the chair & switched to CPAP vent settings & was able to nap. Upon his transfer to bed, he slept a bit. This evening he received some Melatonin to aid his sleep tonight. Perhaps from exhaustion, he was not able to correctly tell me where he was or the year, but he knew his name & repeatedly answered "Misty DiGiovanni" to several questions. Later he asked me how the boys were & seemed rather worried about them both, so FaceTime provided reassurance that they were both okay & he winked & waved at Kim too. He then asked me, "What do you want from me?" My answer was for him to get a good night's rest, a big kiss & the okay for Denise & I to leave by 10p so we too could get a good night's rest. Perry being Perry then nodded & mouthed okay, gave me a kiss & closed his eyes almost immediately. Wishing you all a restful night. Please continue to count your blessings & say prayers not only for Perry but also for Perry's donor & the donor's family too. It has been 4 weeks today since Perry received the gift of life & his donor's heart & lungs have miraculously met every single challenge the last 4 weeks have brought & are they are just as determined as Perry has been throughout his entire life. God works in very mysterious ways. We are eternally thankful for the gift of living organs & that God has answered prayers that have gotten us to & through today!!! God bless all of you!!!![...]
8/23 Saturday Night shift report from Cat RN was that Perry slept well through most of the night & was awake at 5a. Chest X-ray & abdominal KUB (kidney, ureters & bladder) were completed with less sludge in his stomach & small bowel but still lots of stomach air distention. Labs that were completed were stable. Upon arrival, Jillian RN informed me that the Nurse Practitioner for J5-5 CVICU had written orders for Perry to be up in the chair. He was switched to a CPAP mode on the vent. He was a 2 man lift into the chair with the assistance of Jill & myself too. He immediately released several belches. He was content with his positioning only for a short while with lots & lots of fidgeting & the continued expressed desire to stand & walk & concerned about whether he could walk being connected to the vent. I was not very successful in all of my attempts to explain why he could not stand yet, walk yet, or continue to strain himself with his multiple attempts to reposition himself. He was able to be calmed at times by preoccupying him with the TV remote & only very brief eye closings. His Corepak NG feeding tube was removed as it remained out of place & another NG tube was placed to drain air & secretions from his stomach. He managed to make it 3 hours & 10 minutes before becoming completely exhausted & was returned to bed by a 2 man lift. He took a very brief catnap. Although oriented to time, person & place, he so desperately wanted to be standing, walking, & made several attempts to do just that only to be stopped. His brother, Jimmy displayed a discrete sign, "GO PERRY!!! We love You" during yesterday's Amatuer Golf Tournament held at Olympia Fields Country Club which is Perry & his family's stomping grounds & roots for their love of the game of golf. Unfortunately other signs made by cousin Nick & family were confiscated but their sign of love & affection did not get taken away as there "Ain't no way, ain't no how!!" that could ever happen!!!! Evening goodbyes were said to his brother Nick, Tonya, & our nephew Sam as well as to our sons. Michael needs to return to work & Ryan starts his 2nd year of UIC PharmD program. A nap was taken but interrupted due to abdominal discomfort (from the ileus/gastroparesis) & the release of air, more sludge, & stool. Nourishment by NG tube not yet an option & total parenteral nutrition (TPN) not a desired option, another day of managing all of the hard work without much to go on for energy or reserve. Abdominal discomfort & inability to find positions of comfort despite frequent repositions made by staff, me, & my sister continued. He was given Benadryl for itching (& with our high hopes it would allow him to get rest) & Haldol to assist with agitation. We finally got the "yes" nod that we could leave to get rest at about 115a.[...]
What a difference a day can make. This morning Perry was moved to a different room (8) which is enclosed by actual walls rather than curtains. They did Perry's abdominal ultrasound @ 630a and found sludge (old formula) still in his stomach, his abdomen was still distended, there was no gallbladder inflammation and no gallstones, so we believe all of the writhing in pain yesterday was most likely due to him passing those stones. The second GI team came in again for another attempt to place his feeding tube during an EGD, however according to the X-ray his feeding tube again migrated upward and out of place so he is not able to resume his feedings. They are going to order another abdominal X-ray tomorrow morning to see if the tube may go back to its proper placement. If they don't see a success with that, he will have a jejunum feeding tube placed which will either require a formal surgery or a different type of procedure done by endoscopy. [...]
Today was a very long day filled with multiple procedures, poking and prodding... none to Perry's liking.
Last night's report was a restless one for Perry. He was continually moving his hands towards his tubes and what we think was his head (will speak more to it below), to which the nurse believe he was trying to take out his tubes so they put special mittens on his hands to prevent this from happening. His blood pressure also dropped overnight.[...]
Perry had a good night. Early this morning, I received a call to consent for the placement of a central venous access catheter for dialysis via a tunneled approach into his internal jugular vein (side of his neck) under general anesthesia. He returned around 230p but we did not get to see him until around 3p. They were not able to place the catheter on either side perhaps due to his anatomical variations, so they placed another groin access site which will allow him in time to be up in a chair. The neurologist wanted to continue the EEG until tomorrow as recent results have been of concern as similar to what was seen initially during the first few days after the cardiac arrest. There is a possibility that his recent manifestations could be related to medications being low in his bloodstream related to the clotted dialysis circuits requiring discard of the circuits x 3 containing blood with seizure medications not being therapeutic in addition to the Klonopin (anti-seizure med) given by NG (into his stomach) also not getting absorbed into his bloodstream due to being suctioned out of his stomach. He has slept most all of today with only very brief eye openings. Michael & Ryan returned late this evening so we are anxious to see what tomorrow brings as he was pretty zonked during their visits.
According to Tracy’s night shift morning report, Perry had a good night overall. The patient in next bed required lots of acute care interventions during the evening before we left & throughout the early morning, so he slept intermittently. He was awake @ 430a for a bit & she reported he had been rather alert & responsive. He has been asleep most all of today. The circuit for his dialysis clotted as he is not receiving a blood thinner & thus his blood in the circuit had to be discarded. His hemoglobin had been in the 8’s but decreased to 6.6 & at the next lab draw it was 6.2 so he needed to receive a unit of blood when we arrived this morning. [...]
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![...]