Dear Friends:
I've been asked to update you all on how Glen is doing and wish I could tell you that he was awake, aware and doing well. I hardly have the heart to write uplifting things anymore - and I know that is awful of me. I am going to share with you what I wrote last week to a friend regarding Glen and our meeting with the doctors last week. I am hoping she won't mind (I have edited out the personal info).
I was just thinking of you today. We (Doug and I and Edward) had a meeting with the doctors today [4/15] about Glen. It is still a wait and see thing with him. But the lack of any real progress in his condition is not a really good sign. I am still trying to get him on Social Security, and to that end, I am sending his forms and the permanent disability letter into Social Security this week.
Oh Dear – I just really was bummed at the meeting today. I had really thought that maybe the thoracic people were going to turn over Glen’s case to the neurology department, but that wasn’t the case. They instead wanted us to know that they were going to continue treating him. When we asked if he would be better somewhere else if we could get him on social security, the doctor said that there probably were better facilities that could do things like physical therapy to get his limbs more limber, but after talking to the social worker, it’s looking like he won’t be able to move anywhere anytime soon. He is not even medically at the point where he can be moved yet.
I have asked them to do an official investigation into why this happened, and of course I think the hospital is worried that we may bring some kind of suit. I don’t know what anything like that would accomplish, but if he is like this because of an error on their part, then they need to be responsible for his continued medical care for the rest of his life however long that may be.
I think it would be good for you guys to see Glen – I worry that you may be put off by his condition. Frankly, it’s been very hard to visit and stay motivated. I’m having great trouble thinking of things to say to him – because even though he might open his eyes, he cannot look at you – his eyes to do not focus. His arms and hands have begun curling toward his body and his hands are drawing up into fists. They have balls of gauze in his palms to keep them from closing entirely, and on one arm they have a sling which prevents him from drawing it up toward his chest.
He has no control over any of his bodily functions and he is still on the respirator. He is on a 40% oxygen mixture, and before he could be safely moved anywhere, he would have to be only on a 28% mixture I think they said. (An update to that - By Sunday afternoon [4/18] we was strictly on CPAP, which means that he is breathing on his own, but the the respirator is monitoring that and if he doesn't breathe on his own, then it breathes for him - another step in getting him weaned from the vent).
Kathyrn, Glen’s sister, seems to be the most motivated of us all. She is pushing everyone toward believing that in a year Glen will be back to normal. It’s been 5 weeks next Tuesday (on the 20th) – and from all the research and study I’ve done, it looks like Glen may not get much better than he is right now. The doctors, too, are disappointed that he has not made more progress than this since it happened.
So – today was a bad day for me. I feel so utterly helpless and I am. Maybe this is a lesson I’m to learn about patience.
Pretty much the schedule for visiting is that Kathryn goes (I think) on Monday, Wed & Fri in the morning. I try to go on my lunch on Monday afternoons, then again on Thursdays after work and both Doug and I go on Friday nights. But we don’t always keep this schedule. The weekends we all kind of backed off so that his friends could visit, but I’m really not sure who is going up there on the weekends now.
4/20/10 – We took Karine to visit with Glen last Sunday afternoon. She was saddened and I think realized that Glen wasn’t getting much, if any better. She was afraid to touch him because each time she did, he reacted much in the way someone would react when being startled out of a nap. He can react to stimuli, but not interact if that makes any sense.
If you touch his forehead, he many times scrunches up his face and you may think that you are hurting him. Trying to uncurl his fingers or straighten his arms or legs brings about resistance, but they are more reflex actions rather than Glen purposefully pulling them away. He opens his eyes, but he cannot follow your finger or focus on you. His pupils don’t react to light.
He has uncontrollable twitching (and sometimes it’s rhythmic) of his arms and legs. Like the neurons aren’t firing right – and I suppose that’s what a lot of it is. While he’s not in what they call a vegetative state, he is not aware either. We asked the doctor if he was aware of visitors or music or sounds. We know he reacts to sound and to touch, but mostly they believe they are just reflexes to that stimuli.
This is what makes it so difficult to ask anyone to come visit with him. Last week, I took a movie up with me on my I-touch and we watched a movie. That’s a cop out on my part, I know, but that’s what I did. He didn’t react in any way different than he normally does while he’s laying there. He has periods of awake and of sleep.
So, friends, that’s what it is at this point. Kathryn says that the doctors say it would be good for Glen to have friends visit. If you want to drop in, please do. You will need to put on a protective gown and gloves before entering the room, but don’t be put off by that. Glen still has some lingering infection they have not figured out what it is (he still has some pneumonia), so it’s for both your and his protection.
Just please keep Glen in your prayers.
Sincerely,
Darla
Tuesday, April 20, 2010
Tuesday, April 6, 2010
Updated - April 6, 2010
I'm sorry I haven't blogged in so long. It's been a really emotional and upsetting time for all of us. You all know that for some reason Glen had an anoxic (blockage of oxygen to the brain) injury on March 17 - three weeks ago. He was evaluated at 1, 2, and 3 days, at 1 week and then again at 2 weeks.
At 1 week, Glen's prognosis was in the uncertain range. Because he survived two weeks after the "event" (as they call it), his prognosis falls within brain function guidelines they categorize as a good prognostic category. Now, having said that, these are the statistics they gave us when the family met with the doctors last Wednesday afternoon.
Of 210 patients who survived two weeks after an anoxic injury, only 26 those had any markable recovery when studied at 1 year after the incident. Of those 26, 4% did not recover and remained in a vegetative state. 15% of those 26 were severely disabled, meaning they are not able to care for themselves. 81% of those 26 were classified as moderately disabled, meaning they were disabled, but possibly could contribute to their own care. We were also cautioned that these figures were given as a guideline and that medical conditions could occur which could change his prognosis, too. He could get an infection (which he already has), develop pneumonia, etc.
We do not know where in those percentages Glen fits yet. And that was a question one of my boys asked the doctors. At what point will they be able to tell us how much he is going to recover. Their answer of course, was that the study was done at 1 year - so --- well....
Here are a couple of things we do know. A major portion of his right brain was effected. We know this because Glen has no movement, reflexes, feeling on his left side. We know that his left brain is also effected because "Glen shouldn't be like he is today" (direct quote from the neurologist). But we know that his left brain is effected because Glen wasn't able to move his right side either at first.
At just under two weeks, Glen began to move his right arm up toward his chest and his right foot began to move as well. He opens his eyes off and on, but he does not focus and even though his eyes may move from side to side, he cannot follow anything. He at this point is not able to follow verbal commands. He cannot squeeze your hand with his fingers. He continually moves his right hand up toward his chest and his right leg moves in a jerking motion. I do not believe he is aware. He has reflexes, especially around his face, and when you touch him, he sometimes grimaces. Although it may appear that he opens his eyes or moves his hand or feet on command, if you watch, he does repetitive motions over and over again - even if he has his eyes closed and appears to be asleep. It's all so confusing.
This morning the nurse told Doug that he moved his left foot a small amount today. Glen still has that pesky infection that keeps rearing it's head. He's running fever of about 101.5. They are giving him tylenol which seems to bring it down pretty quick. Yesterday they did an ultrasound of his heart to make sure there was no infection in the valve that was replaced, and today, they were doing a scope down his throat so they could put eyes on the valve. We haven't gotten the results from that test yet. Will post once I find out tomorrow.
Today they also began to reduce his dependence on the respirator. It is our hope that once we are able to get Glen on social security or some type of medicaid we will be able to move him to a place where he can get more help toward recovery.
So, friends, this is all we know. I wish I could make myself sound more upbeat and positive for you. I'm finding it very difficult not to be very discouraged because it's been so dang long that he's been in the hospital. It is so hard to wait and see him like this - at least it is for me.
Please keep Glen in your daily prayers.
At 1 week, Glen's prognosis was in the uncertain range. Because he survived two weeks after the "event" (as they call it), his prognosis falls within brain function guidelines they categorize as a good prognostic category. Now, having said that, these are the statistics they gave us when the family met with the doctors last Wednesday afternoon.
Of 210 patients who survived two weeks after an anoxic injury, only 26 those had any markable recovery when studied at 1 year after the incident. Of those 26, 4% did not recover and remained in a vegetative state. 15% of those 26 were severely disabled, meaning they are not able to care for themselves. 81% of those 26 were classified as moderately disabled, meaning they were disabled, but possibly could contribute to their own care. We were also cautioned that these figures were given as a guideline and that medical conditions could occur which could change his prognosis, too. He could get an infection (which he already has), develop pneumonia, etc.
We do not know where in those percentages Glen fits yet. And that was a question one of my boys asked the doctors. At what point will they be able to tell us how much he is going to recover. Their answer of course, was that the study was done at 1 year - so --- well....
Here are a couple of things we do know. A major portion of his right brain was effected. We know this because Glen has no movement, reflexes, feeling on his left side. We know that his left brain is also effected because "Glen shouldn't be like he is today" (direct quote from the neurologist). But we know that his left brain is effected because Glen wasn't able to move his right side either at first.
At just under two weeks, Glen began to move his right arm up toward his chest and his right foot began to move as well. He opens his eyes off and on, but he does not focus and even though his eyes may move from side to side, he cannot follow anything. He at this point is not able to follow verbal commands. He cannot squeeze your hand with his fingers. He continually moves his right hand up toward his chest and his right leg moves in a jerking motion. I do not believe he is aware. He has reflexes, especially around his face, and when you touch him, he sometimes grimaces. Although it may appear that he opens his eyes or moves his hand or feet on command, if you watch, he does repetitive motions over and over again - even if he has his eyes closed and appears to be asleep. It's all so confusing.
This morning the nurse told Doug that he moved his left foot a small amount today. Glen still has that pesky infection that keeps rearing it's head. He's running fever of about 101.5. They are giving him tylenol which seems to bring it down pretty quick. Yesterday they did an ultrasound of his heart to make sure there was no infection in the valve that was replaced, and today, they were doing a scope down his throat so they could put eyes on the valve. We haven't gotten the results from that test yet. Will post once I find out tomorrow.
Today they also began to reduce his dependence on the respirator. It is our hope that once we are able to get Glen on social security or some type of medicaid we will be able to move him to a place where he can get more help toward recovery.
So, friends, this is all we know. I wish I could make myself sound more upbeat and positive for you. I'm finding it very difficult not to be very discouraged because it's been so dang long that he's been in the hospital. It is so hard to wait and see him like this - at least it is for me.
Please keep Glen in your daily prayers.
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