Through the writing of my updates, not only do I find this to be a cathartic process but I'm also attempting to provide an honest and complete overview of Justin's day to day progress. As we settle in for the long haul, I'm trying to remain factual and insightful without allowing my personal emotions, experiences or expectations to cloud the overall picture.
Whilst Justin remains in ICU, our visiting time is limited to two 1 hour visits per day, since there are 4 of us, these are split into 2 pairs so each person essentially has 30 minutes each with Justin. In the last couple days, that time is generally spent looking for small responses to commands, such as "blink" "Squeeze the hand" "poke out the tongue" "move your lips" etc, simple but important commands that will give a real indication of his level of comprehension.
Justin's behaviour can differ from one visit to the next, he can be awake and more aware in the morning, then asleep and non responsive in the afternoon, and visa versa. He's also receiving intensive physio which is taking it's toll on his body and mind, he's generally more tired after the physio so less likely to respond to anything. We're all looking for signs and we're all using different tactics to arouse his senses, none of us know what's working and what isn't. It's a guessing game at best. Talking loudly or shouting seems to get his eyes to open, once his eyes are open, he'll then try to communicate by moving his lips, sometimes you can hear a faint mumble sometimes nothing, he'll blink involuntarily but not on command, he'll retract his arms as a response to pain, but I'm doubtful that he's moving them as a response to a command, he'll push and pull against you during physio but won't squeeze my hand when I ask him. It's consistencies we're looking for but just not really getting at the moment.
It's impossible to assess his minute by minute behaviour without being there next to him 24 hours a day. There may be a lot going on in our absence, we have to rely on the nurses to be present when these things take place. That said, the nurses are brilliant and are always ready to inform us on what's been happening and how Justin has been "responding" during the long periods between visits.
There was cause for some celebrations this morning when Janie and Dad returned from the hospital. It seemed a breakthrough had been made when Justin winced in pain when his left arm was raised, then croaked "Yeah" when Janie asked him if it hurt. The nurses tried to get him to do it again for Dad but he didn't, he did however give Justin a bit of an arm wrestle and Dad felt some strength in him which he really needed to see. You can imagine Mums excitement on the way to the hospital for the afternoon visit, if he can say "yes" then surely he can say "mum". I couldn't think of anything I'd rather see or here at the moment. But alas it wasn't to be, Justin was "asleep" for the most part and only managed a lip mumble and an arm pull for her. He pretty much did the same for me, I had to really wake him up too which he didn't look that pleased about. I think next time i'll whisper in his ear "Where's that money you owe me?" he'll probably jump up and run out of the hospital.
With all the will in world, the managing of ones expectations is probably one of the hardest of things to do in this situation as you can imagine. These are all new skills that we're trying hard to master, we're doing our best, and through my updates, I'm also attempting to make sure you all do the same. At the end of the day, we all want Justin back and we'd all like it sooner rather than later, but in the words of Bruce Lee who seems to sum it up perfectly...
"I'm not in this world to live up to your expectations, and you're not in this world to live up to mine"
… and Bruce Lee is the man so enough said.
C'MON JUSTIN
Whilst Justin remains in ICU, our visiting time is limited to two 1 hour visits per day, since there are 4 of us, these are split into 2 pairs so each person essentially has 30 minutes each with Justin. In the last couple days, that time is generally spent looking for small responses to commands, such as "blink" "Squeeze the hand" "poke out the tongue" "move your lips" etc, simple but important commands that will give a real indication of his level of comprehension.
Justin's behaviour can differ from one visit to the next, he can be awake and more aware in the morning, then asleep and non responsive in the afternoon, and visa versa. He's also receiving intensive physio which is taking it's toll on his body and mind, he's generally more tired after the physio so less likely to respond to anything. We're all looking for signs and we're all using different tactics to arouse his senses, none of us know what's working and what isn't. It's a guessing game at best. Talking loudly or shouting seems to get his eyes to open, once his eyes are open, he'll then try to communicate by moving his lips, sometimes you can hear a faint mumble sometimes nothing, he'll blink involuntarily but not on command, he'll retract his arms as a response to pain, but I'm doubtful that he's moving them as a response to a command, he'll push and pull against you during physio but won't squeeze my hand when I ask him. It's consistencies we're looking for but just not really getting at the moment.
It's impossible to assess his minute by minute behaviour without being there next to him 24 hours a day. There may be a lot going on in our absence, we have to rely on the nurses to be present when these things take place. That said, the nurses are brilliant and are always ready to inform us on what's been happening and how Justin has been "responding" during the long periods between visits.
There was cause for some celebrations this morning when Janie and Dad returned from the hospital. It seemed a breakthrough had been made when Justin winced in pain when his left arm was raised, then croaked "Yeah" when Janie asked him if it hurt. The nurses tried to get him to do it again for Dad but he didn't, he did however give Justin a bit of an arm wrestle and Dad felt some strength in him which he really needed to see. You can imagine Mums excitement on the way to the hospital for the afternoon visit, if he can say "yes" then surely he can say "mum". I couldn't think of anything I'd rather see or here at the moment. But alas it wasn't to be, Justin was "asleep" for the most part and only managed a lip mumble and an arm pull for her. He pretty much did the same for me, I had to really wake him up too which he didn't look that pleased about. I think next time i'll whisper in his ear "Where's that money you owe me?" he'll probably jump up and run out of the hospital.
With all the will in world, the managing of ones expectations is probably one of the hardest of things to do in this situation as you can imagine. These are all new skills that we're trying hard to master, we're doing our best, and through my updates, I'm also attempting to make sure you all do the same. At the end of the day, we all want Justin back and we'd all like it sooner rather than later, but in the words of Bruce Lee who seems to sum it up perfectly...
"I'm not in this world to live up to your expectations, and you're not in this world to live up to mine"
… and Bruce Lee is the man so enough said.
C'MON JUSTIN
No comments:
Post a Comment