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Hopefully this will come through and work properly. IF it is not the first to come up, watch My Cat and the Turtle. I thought it was the best. Dunno who did these but they are great.
Joe is improving finally. His white cell count is normal and his temp is too. Though his lungs are still cloudy, he underwent a tracheostomy yesterday and came through with flying colors, though he was scared at first to be breathing through his neck and not his mouth. Today, I went in and discovered that he had already been up and transferred to a chair for the first time in a week and a half, where he had been given oxygen through the vent but no pumping, so that his lungs and chest muscles had had to breathe on their own. Though he felt sore afterwards, he had no idea that he was doing it, or having to do so as no one told him the pump was off, so it was unconscious, the reflex action of breathing -- a great sign.
So now what we are looking at may be better than we could have hoped for a week ago. Joe still needs weeks of rehab, it seems, but after that, if he can be weaned from the vent, especially if it is fully weaned at least for a while, then he will be able to come home. I know that won't be forever, but it would be too bad for him never to see his apartment again, after having left it so abruptly a week ago last Tuesday. He might have to use the BiPap more, sure, but if he is not tethered to a vent, he will essentially be independent and mobile, more or less. Right now, he is tired out and still only able to spell things on the alphabet board I made for him rather than write or try to speak. But the crisis has definitely passed and he remains in ICU only because he is still on the vent and not because he is still acutely deathly ill (though of course, he still has ALS).
As for me? I am pretty tired...I dunno what else to say. My computer hard drive was replaced "just in time" they said, but when I got home, I found all my documents and music and pictures wiped out and most of my applications useless. Now I can only hope they can resurrect them or years of work is lost. I asked them to back it up, the hard drive, a week ago. They should have that good copy, but I can't be positive. I am tired, too tired to care at this point. What does it matter? What does anything matter? Joe is alive at least. And Lynn is still alive, though in pain as always, and nothing the doctor does, which is precious little, mind you, changes that. (Once you are an 80 year old woman in chronic pain taking oxycontin, the docs pretty much forget about helping you or doing anything else for you...Never mind that the oxycontin doesn't even work!) Lynnie/Carolyn tells me that antidepressants actually work to treat pain, in and of themselves and apart entirely from any psychiatric effect, but Lynn L doesn't seem interested, or Cy doesn't, or the idea scares them, or the name does...Either way, neither of them have looked into it, despite my giving them articles about the usefulness of ADs for a percentage of people with neuropathic (nerve) pain. I hate to see them stumble around in the dark, not knowing any better than to do what the doc says: take oxycontin and trust him. It's obviously not good enough, since Lynn is often in excruciating pain, oxycontin or no. Yet they will not challange him to change his regimen to something that does work or refer her elsewhere if he won't. They simply assume he knows what he is doing and that if he doesn't change her regimen there is a very good reason not to, ie there is nothing else to try (HAH!).
I know, I was supposed to write about how I am, but all I can say is, I am tired and don't know which end is up. I'm not going to write any more than that. This computer thing threatens to overwhelm me...
Joe had a bad night last night and was unable to breathe well enough to get enough oxygen so they had to intubate him and place him on a ventilator. This most likely means he will be on it now permanently. Though they will try to wean him off it once he is better (if he gets better), chances are slim that he will be able to breathe on his own without it, now that his body has gotten used to using it. That's just how it is with ALS.
Right now, this very minute, he has a high temperature and the left lobe of his lung is whited out by pneumonia, though his pulse has been lowered from the 130s to around 100 his BP (blood pressure) is low and is artificially supported for the time being. And I am sitting at home, hoping and waiting and not wanting to go to bed, though I must (this according to Dr O) lest someone from the hospital call to tell Karen or me he has taken a turn for the worse. How much worse can it get before it is critically life-threatening? When do we go in and just wait? I hope it never comes to that but so far I have not seen any good sign, no sign that he has turned some corner and is definitely going to recover. When his fever breaks, that will be one way of knowing...Right now it seems like he is going from one bad thing to something worse, though Karen keeps telling me things are looking up. They are? How? But I am furious with Karen right now and don't want to talk about her. Better that I cram my anger and stay civil right now, as Joe needs us in agreement, not at odds with one another. All that I will say is that she is a pathological or simply baldfaced liar.
Enough for now. I will keep you posted, if I can.
Joe had sudden problems breathing this past week and went to the emergency room on the evening of July 3. After an all-night emergency work-up and stabilization there (he'd seen his internist that morning, with an all-clear verdict?) he was admitted to the ICU in the morning, where he has been ever since, and without much improvement that I can tell. He still coughs because there is stuff blocking his airway that he can't clear. He can't sleep because of it and yet no one has done a tracheostomy, which would seem to me to be the humane thing to do. It is not as if he is going to get better, after all, and it would make it possible to suction him and enable him both to breath and to feel better. Plus, he would be ready for a ventilator when he needs one.
For those who don't understand the terminology: a tracheostomy means the hole or stoma that is made in the trachea or windpipe -- hence, tracheo-stom-y -- so that a person can breath without using his mouth, nose or throat. You do not need to use a ventilator or mechanical breathing apparatus with a tracheostomy. You just need to keep the hole open so it doesn't scab over and close up or close over the airway it created. But you do need, usually, to have a tracheostomy for longterm ventilator usage.
Visited with Joe and talked with Dr J about Joe's lung function. It seems that they are considering putting Joe on a ventilator along with a tracheostomy, because his CO2 levels are so high and he is not exchanging gases well enough, though his oxygen levels are fine. The problem is, I guess, that you can die of too high CO2 as well as of too little oxygen. At this point it is a matter of keeping him alive long enough to let him fight off the pneumonia, with or without a ventilator. But if he goes on a ventilator he may never go off it, as an ALS patient usually becomes completely dependent on it once put on it for breathing assistance.
He could die. I have to put this bluntly, for my sake. This pneumonia could kill him, ventilator or no. It is the way many ALS patients die...and he knows this, which scares me. I know he does not want to die, that he was looking forward to so much living, was not ready for this to be even a possibility. And neither am I. I do not know if he is scared or simply too uncomfortable to be scared. But the discomfort is the feeling of not being able to breathe, which IS by definition the primitive and primal fear that represents death: If you don't breath you die; if you aren't breathing, are not a respiring creature, you are not alive. So the inability to breathe and the fear that results is by definition the fear of death, no? How can one be uncomfortable enough to look in horrible distress, yet not be scared of dying by suffocation? We ALL fear that! Even Joe...despite his disavowal of a fear of death in general.
I am scared for him. If he dies -- this is not at all certain, just a possibility, and tonight things are looking better for now, as he is finally sleeping, with better numbers according to the nurse Karen talked with -- I want him to die without fear, and without pain, it's the least I can ask for a wonderful loving friend. Naturally it is not mine to grant, nor to ask, in the sense that there is no one else to grant my wish. Only fate and luck. But anyone who reads this: if you have a faith that sustains you and you believe in prayer, Joe needs it now. Please keep him in your prayers if you can? He is only 51 and a friend to everyone he has ever met. His one wish in life, aside from wanting to make a mark as an inventor and engineer, was to be known as a "good guy," the one who was a friend to all and an enemy of none. I'm sure he would befriend all of you if he met you!