Tracy RN’s morning update indicated that Perry had awakened several times & was restless during the night. Lab values were within his trends with BUN & creatinine increasing as he is due for dialysis today.
Upon my arrival, his day shift RN, Travis, informed me that Perry will have a bronchoscopy next week (relative to his recent chest X-Rays & chest CT scan results). It has not been scheduled yet. Perry's early morning OT session focused on hand/arm exercises with 1# weights & therapy putty. I also learned that despite yesterday’s discussion with the Pulmonologist that the order for a Neurology consult had not been requested but instead that the Seroquel dosage had been increased to 50 mg & that the Melatonin (a sleep medication) was ordered as a "scheduled" medication (to be given every night) instead of as needed by the Intensivist. I then requested that Travis convey to the ordering physician that the Seroquel dosage not be increased & for the Melatonin 3 mg “scheduled” dose be changed to an “as needed” medication since he has not had repetitive restless nights. With repeated stated concerns that Perry has had an increase of sleeping during the daytime for ~16-18 days as well as an increase in shaking twitches/tremors throughout the day & now also while he is sleeping which is a change from his baseline, I asked to follow through with a Neurology consult since they had signed off of the case after his last EEG. I also requested, if there were any issues to please have the physician come & talk to me especially since no one had communicated the change with the initially discussed plan or the newly revised plan.
Perry tolerated trach capping from 1019a-1045a, an increase by a few additional minutes since yesterday. He was able to cough effectively & brought up a lot of post nasal drainage & loosened up some of his lung congestion. He then slept for a bit. Rather than Dean omitting a PT session due to Perry sleeping, I suggested that he proceed with doing some passive range of motion (PROM) exercises with Perry resting on his sides to help stretch out his hip & leg muscles as Dean had mentioned last week. Perry was able to rest with his eyes closed & was able to participate in the stretches & leg movements He nodded that the stretches also felt good to do. And I was able to give him a back massage.
Four hour dialysis started @ 1250p with 3 liters of fluid removed today. He rested intermittently during dialysis. The Neurology resident consulted, & I made her aware of the recent increase in myoclonus & Perry’s concerns as well as it now occurring while he’s asleep which is a change. Perry mentioned that it is one of the reasons why he hasn’t been able to sleep as well lately as he is awakened by it. I also mentioned that he has continued to sleep throughout most of the daytime for the last 2 wks + except for Wednesday & that he has only had an intermittent decrease in sleeping during the night. She informed him that if the Klonopin was increased that he may become even more sedated, & she needed to inquire with her senior physician regarding tremors that are typically associated with ProGraf & additional information relative to Perry having a positive result for Epstein Barr. Epstein Barr is a virus associated with mononucleosis for which he has had a positive result since 8/24 & his donor having been positive. Besides fatigue, there can be serious complications especially for an immunocompromised person. One of the Pulmonary residents came by not aware that the Neurology resident had actually consulted as she said it had been decided yesterday instead of the Neurology consult they had decided to increase his Seroquel to 50 mg. I expressed concern that neither the Pulmonology team nor the Intensivist team communicated such plan. The Seroquel dosage was decreased back to 25 mg at bedtime. Later on Dr. Baron, the senior Neurology physician came to evaluate Perry with the rest of the Neurology team. He discussed the myoclonus (twitches, jerks, tremors) & the many variables that could also be adding to the myoclonus - Perry’s anoxic brain injury from 8/5, ProGraf anti-rejection medication, need for muscle development & strength, anxiety, electrolytes, & other labs, etc. He discussed with Perry that increasing the Klonopin may make him more tired & there may have to be a tradeoff & there’s a possibility that they may never go away. Since Perry continued to state "I can't do anything" related to the increase in myoclonus & demonstrated to the doctor the severity of the increased movements of his hands & total body shaking, it was decided that Klonopin dosage would be increased to 1.5 mg at night & remain at 1 mg dose in the AM. I reinforced with the Dr. Baron that he also shows a significant increase ~1-1½ hours before the Klonopin is due & when he is anxious or becomes frustrated. I reinforced with Perry that he has made significant progress with what he has endured & that he has to believe us & have faith. I stressed that as he continues to make progress & is able to talk regularly, becomes stronger, & undergoes more & more PT & OT, many of his current frustrations & anxieties will be decreasing. I emphasized there is a lot of work ahead to be done, & we will work through it together. He has to focus on short-term goals right now, one day at a time, & one trach capping at a time. It is important to formulate long-term goals to work toward but right now the short-term goals are our challenges. He expressed that he wants to be able to attend Michael’s (& Kim's) wedding & to be able to see Ryan graduate, & he is currently worried that he won’t. Mom & I reinforced that unfortunately none of us has tomorrow promised, & it is best not to worry, & if he needs to ask God to have faith, then he should be asking Him for exactly that - faith. I also reinforced with Perry, that if I recall he always was the one who said, “Don’t worry about it!!!” He has been also doubting that he has what it takes to get through it all…. so…. I reminded him of his strong will & determination, the many miracles which have occurred since he was born, throughout his life, & throughout his transplant/post-transplant journey, & the many, many, many prayers being said on his behalf by his family & friends & those we don’t even know, & of course love. Lots of kisses & caresses were given too.
Dialysis ended at 450p & the medication, Cathflo, was given as his femoral IV & dialysis access has been rather sluggish so trying to keep it from becoming occluded. Trach capping was then started @ 530p, & he was able to tolerate it fairly well until 606p for a total of 36 minutes. He was able to cough effectively & brought up a lot of post nasal drainage & loosen up some of his lung congestion. Headache started right after completing but that’s to be expected due to the carbon dioxide level increase. Another step in the right direction & progress with VERY HARD work. He was able to say, “Thank you Ann for coming” to my mom while he was capped.
He remained awake although obviously tired for the Cubs vs St. Louis Cardinals game starting @ 645p. Josh RN, his night shift RN was in agreement to delay Perry’s bedtime medications so that he could remain awake for the game. I had to remind Perry not to change the channel at the beginning of the 9th inning. Hopefully tomorrow will be a better day for the Cubbies!!!