According to Lora RN, his night shift RN, Perry had a very restless night without much REM (deep) sleeping. He just was not able to get comfortable almost the entire night & was fidgety with frequent self-repositioning. He was not complaining of pain.
Prior to my morning arrival, he had gotten bathed & was dangled at the edge of his bed. He was asleep when I arrived. He finally awakened around 1130a & agreed to go into chair mode. He asked me to find Matt RT so that he could start with trach collar breathing. Trach collar breathing is when Perry is doing all of the breathing on his own & is off of the vent. Air enters through his trach, mouth & his nose. In essence, it is THE big step toward being weaned off of the vent. A trach collar is a clear piece of plastic that cups over the end of his trach tube, & it is connected to a percentage of humidified oxygen via a blue corrugated piece of tubing. The trach collar has a strap that goes behind Perry's neck to keep it in place. Trach collar breathing is VERY HARD WORK for him for all of the following reasons: all of his muscles are still very weak; his abdomen is distended so his new lungs are not allowed to expand completely which creates more pressure & resistance within his chest cavity thus making it even harder to breathe; Perry’s diaphragms, the 2 muscles which separate the chest & abdomen & are responsible for controlling the actions of breathing in & out, were previously not working; he is a mouth breather so he also takes in lots of air into his stomach leading to more gastric distention = a vicious cycle; it requires his total focus & concentration; it depletes his energy; he’s not able to rid all of the carbon dioxide as he breathes out; & he uses his neck & shoulder accessory muscles to breathe - as seen when a person is struggling to get enough oxygen (asthma attack, anaphylactic reaction, obstruction) & these muscles start to clench down with every breath in an attempt to acquire more air.
He was able to complete 55 minutes of trach collar breathing from 1205p-1p. A lot of thicker white secretions were removed with effective & stronger coughs. Unfortunately, he was exhausted & slept through most of the Bears game & Cubs game. I awakened him to receive communion ~4p. Today was the first time he was able to receive the eucharist as the Intensivist physician had given him permission to do so even though he has not had a recent swallow study done. Steve, his day shift RN, had also gotten the order for Perry to be given Mylicon orally (chewable tablet) instead of via his jejunostomy tube. It will now be given 3 times a day instead of two times a day. Hopefully, these changes will help him to rid more air from his stomach as well as his intestines.
He then was able to complete ~20 minutes of trach collar breathing & then an additional 10 minutes of trach capped breathing. During trach capped breathing, he is not connected to the vent so he is doing all of his breathing on his own. It involves placing a cap over the trach opening & requires him to breath by his mouth & nose. He is also able to talk with much effort & concentration. Today he said his first & last name, “I’m tired,” “I want to be done with this,” “Hello football fans.” I asked him to believe & say out loud the following sentence so he could hear himself say “I am doing awesome!” His non-verbal communication clearly did not match the words, but I was proud that he said them & could hear himself say the words. Then he said, “But I don’t think that I am doing awesome” which did match his non-verbal communication. He received much reinforcement & praise of his great progression & hard work. And then he once again was almost immediately back to sleep.
He continued to have a lot of intermittent hand/arm, feet/leg shaking tremors, & mouth/tongue tremors today while awake. While dangling this evening, he was experiencing a significant amount of head/trunk & extremity shaking tremors. I was able to get him to state what it is of which he has been afraid….that he won’t be able to talk; that the tremors won’t be controlled; & that he won’t be able to walk & function independently. I had to reinforce that things will take time, that he is able to talk & he will be able to talk for longer timeframes as he gets stronger & able to come off of the vent; & that hopefully the tremors will be able to be controlled with the progression of muscle development, strength, & physical & occupational therapy. I reinforced that God is in control, & that we do have a lot of hard work ahead that will not be able to be accomplished “today” but with the passage of time so not to be worried or afraid. He has been asleep since 10p & so I hope he will have an “uneventful night” per Lora’s morning report.