Another update on my dad (not good news)
I had a meeting today with my dad’s doctors at Montefiore hospital. Jordan put me in contact with a family friend of his that works at Montefiore last week and after speaking with him, he referred me to an EEG specialist that would check out my dad. So I requested a second opinion on his condition last week.
Well I was called today and told that the tests were done on Friday afternoon and the results were in and looked over this morning. So when I went to the hospital today after work, we discussed the new results.
Sadly, I was basically told the same thing the people in Hartford had told us. The EEG specialist called my dad’s condition “diffuse cerebral disfunction.” Which basically means that- the cerebrum is the part of the brain that basically makes us who we are. It controls thoughts, speech, etc. And it turns out that that is the part of the brain which has been effected the most by the strokes that my dad had. The other part of his brain that controls the more involuntary functions is basically alright. So that is why we are seeing him opening his eyes and looking around a bit. It doesn’t necessarily mean he is trying to wake up or look at us, it’s just his eyes looking around and reacting to objects, sort of like a reflex.
The words the specialist used were: “chances are grave that he regain cerebral function.”
This was the third EEG done on my dad. He had two up in Hartford (right after the initial strokes, and then another about 3 weeks later), and now the one down here. There has been basically no improvement, and there doesn’t look to be any. As was stated before the “best case scenario” is that he MIGHT be able to eventually be able to respond to people maybe through blinks of his eyes or taps of his fingers and stuff, but he basically wouldn’t be the same person he once was.
It’s just hard to hear... especially considering my dad is such a lively person. He just LOVES to tell jokes, and be the center of attention. So to see him just lying there in the state he’s in, and knowing he most likely won’t be the same again is heart-wrenching. And we were hoping against all odds that maybe a second opinion here in NY would tell us something different than what we heard up in Hartford but it hasn’t, and the time is quickly approaching where we are going to have to make a choice.
Right now, my dad has a small fever. So he can’t be discharged b/c they have to treat it. But as soon as he is healthy again, he will be stable and the hospital will basically have no reason to keep him there and they will need to immediately seek out moving him to a nursing or rehab facility.
So our choice is to either have them aggressively fight the fever (put in a central line, do CAT scans to find out what’s wrong, etc), and then when he is better to put him in a nursing home with ventilators OR to go the Palliative care route, and have him moved to the comfort care zone of the hospital, where he will be taken off the ventilator and be put on morphine (or other drugs) to make him as comfortable as possible and just let nature take its course. (Although let me clear one thing up. We CAN have the doctors continue to treat the fever with just antibiotics and THEN take him off the ventilator, it just doesn’t make sense to go the aggressive route if that’s the case. So the doctor is trying to be cool with me and giving us that option which could give us more time but still, we wouldn’t expect my dad to have a fever for too long, so decision time is rapidly approaching no matter which way we look at it).
Obviously, neither of these are great choices. We REALLY do not want to put my dad in a nursing facility. We’ve heard horror stories about those places about people being neglected, and even abused. We don’t want to put my dad through that. Plus, who knows how long the insurance would cover it for?
Thing is, the other choice obviously sucks a whole lot more. If we take him off the ventilator then we are basically just beginning the countdown to his passing. It could be as quick as a few hours, or stretch on as long as a couple of weeks (possibly more). And that is going to be something very rough to go through.
I know what my dad would want in the long run. He has said in the past that he wouldn’t want to live in a vegetative state. We never seriously discussed it or put it down legally, but he has stated it jokingly before. Thing is, even though he was joking, we know that he was serious beneath it all. He would NOT want to live his life in his current state. The main thing in the back of my mind is, I know what he wants, but have we given him enough time to have even the slightest chance at a miracle?
I mean, I’m not kidding myself, I know it’ll take nothing short of a miracle for my dad to get better, but I’m a Christian and I have great faith. But the thing is, how much time do I give him? Initially when I was told everything back in Hartford my thought was “maybe about three months...” And at this point we are at about 6 weeks. Which is short of my original plan, but then again, if he hasn’t changed at all in 6 weeks, what would another 6 weeks really do? Especially with the prognosis that was given to me by TWO sets of doctors after three exams.
So it’s like, I know what I should do, but I can’t help but have these questions in the back of my head. It just really sucks... I was hoping I wouldn’t have to make this decision. I wouldn’t wish this kind of “responsibility” on anyone.
I thought I had been handling the whole situation pretty well this past month. I mean, I was like a zombie that first week, but afterwards, since my dad was up in Hartford I was able to try to regain a semblence of my life by going out and having fun and trying to keep everything in the back of my mind. But after this week, and especially after tonight, I’m just right back to that “zombie” mode. I’m just so emotionally spent, and then my mind just starts to wander and think about things like- feeling sad that my dad won’t be around for my wedding, or for the eventual grandchildren, and also wishing that I had spent more time with him in the past few years. I know I shouldn’t beat myself up over that kind of stuff, and I’m trying not to, but sometimes it’s just hard to NOT think about things like that.
So yeah, that’s where things stand with me right now. I just had to type all this out, b/c I wanted everyone to know the situation, as well as just put my emotions down on “paper.” Plus, I don’t think I could handle explaining this over and over again to people.
Once again, I just ask that you all please keep my dad, me and my family in your prayers. We’ll probably have to make our decision anytime as early as tomorrow to about a week from now, so I know I’ll really need the strength and support of all my family and friends. Thank you once again and God Bless!
Well I was called today and told that the tests were done on Friday afternoon and the results were in and looked over this morning. So when I went to the hospital today after work, we discussed the new results.
Sadly, I was basically told the same thing the people in Hartford had told us. The EEG specialist called my dad’s condition “diffuse cerebral disfunction.” Which basically means that- the cerebrum is the part of the brain that basically makes us who we are. It controls thoughts, speech, etc. And it turns out that that is the part of the brain which has been effected the most by the strokes that my dad had. The other part of his brain that controls the more involuntary functions is basically alright. So that is why we are seeing him opening his eyes and looking around a bit. It doesn’t necessarily mean he is trying to wake up or look at us, it’s just his eyes looking around and reacting to objects, sort of like a reflex.
The words the specialist used were: “chances are grave that he regain cerebral function.”
This was the third EEG done on my dad. He had two up in Hartford (right after the initial strokes, and then another about 3 weeks later), and now the one down here. There has been basically no improvement, and there doesn’t look to be any. As was stated before the “best case scenario” is that he MIGHT be able to eventually be able to respond to people maybe through blinks of his eyes or taps of his fingers and stuff, but he basically wouldn’t be the same person he once was.
It’s just hard to hear... especially considering my dad is such a lively person. He just LOVES to tell jokes, and be the center of attention. So to see him just lying there in the state he’s in, and knowing he most likely won’t be the same again is heart-wrenching. And we were hoping against all odds that maybe a second opinion here in NY would tell us something different than what we heard up in Hartford but it hasn’t, and the time is quickly approaching where we are going to have to make a choice.
Right now, my dad has a small fever. So he can’t be discharged b/c they have to treat it. But as soon as he is healthy again, he will be stable and the hospital will basically have no reason to keep him there and they will need to immediately seek out moving him to a nursing or rehab facility.
So our choice is to either have them aggressively fight the fever (put in a central line, do CAT scans to find out what’s wrong, etc), and then when he is better to put him in a nursing home with ventilators OR to go the Palliative care route, and have him moved to the comfort care zone of the hospital, where he will be taken off the ventilator and be put on morphine (or other drugs) to make him as comfortable as possible and just let nature take its course. (Although let me clear one thing up. We CAN have the doctors continue to treat the fever with just antibiotics and THEN take him off the ventilator, it just doesn’t make sense to go the aggressive route if that’s the case. So the doctor is trying to be cool with me and giving us that option which could give us more time but still, we wouldn’t expect my dad to have a fever for too long, so decision time is rapidly approaching no matter which way we look at it).
Obviously, neither of these are great choices. We REALLY do not want to put my dad in a nursing facility. We’ve heard horror stories about those places about people being neglected, and even abused. We don’t want to put my dad through that. Plus, who knows how long the insurance would cover it for?
Thing is, the other choice obviously sucks a whole lot more. If we take him off the ventilator then we are basically just beginning the countdown to his passing. It could be as quick as a few hours, or stretch on as long as a couple of weeks (possibly more). And that is going to be something very rough to go through.
I know what my dad would want in the long run. He has said in the past that he wouldn’t want to live in a vegetative state. We never seriously discussed it or put it down legally, but he has stated it jokingly before. Thing is, even though he was joking, we know that he was serious beneath it all. He would NOT want to live his life in his current state. The main thing in the back of my mind is, I know what he wants, but have we given him enough time to have even the slightest chance at a miracle?
I mean, I’m not kidding myself, I know it’ll take nothing short of a miracle for my dad to get better, but I’m a Christian and I have great faith. But the thing is, how much time do I give him? Initially when I was told everything back in Hartford my thought was “maybe about three months...” And at this point we are at about 6 weeks. Which is short of my original plan, but then again, if he hasn’t changed at all in 6 weeks, what would another 6 weeks really do? Especially with the prognosis that was given to me by TWO sets of doctors after three exams.
So it’s like, I know what I should do, but I can’t help but have these questions in the back of my head. It just really sucks... I was hoping I wouldn’t have to make this decision. I wouldn’t wish this kind of “responsibility” on anyone.
I thought I had been handling the whole situation pretty well this past month. I mean, I was like a zombie that first week, but afterwards, since my dad was up in Hartford I was able to try to regain a semblence of my life by going out and having fun and trying to keep everything in the back of my mind. But after this week, and especially after tonight, I’m just right back to that “zombie” mode. I’m just so emotionally spent, and then my mind just starts to wander and think about things like- feeling sad that my dad won’t be around for my wedding, or for the eventual grandchildren, and also wishing that I had spent more time with him in the past few years. I know I shouldn’t beat myself up over that kind of stuff, and I’m trying not to, but sometimes it’s just hard to NOT think about things like that.
So yeah, that’s where things stand with me right now. I just had to type all this out, b/c I wanted everyone to know the situation, as well as just put my emotions down on “paper.” Plus, I don’t think I could handle explaining this over and over again to people.
Once again, I just ask that you all please keep my dad, me and my family in your prayers. We’ll probably have to make our decision anytime as early as tomorrow to about a week from now, so I know I’ll really need the strength and support of all my family and friends. Thank you once again and God Bless!
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