Dave was released from the hospital on Sunday. The CT scan on Saturday showed more fluid accumulation since the Friday surgery - but just a small amount. CT Sunday morning showed the same accumulation - no increase in volume. There is no clear indication of where we go from here. Dave's brain has a midline shift to the right - 4mm compared to 14 mm with the previous subdural hematomas. His brain has still not expanded to fill the space in the left side of his brain, and there appears to be a small pocket of air. We have a follow up CT scan in nine days, and will see the neurosurgeon at that time. Two weeks from today we have our six month checkup with our neurologist. By then, I hope to have a picture of what the near future looks like. I want to know how much the brain atrophy from the FTD is contributing to this continued bleed, and how these last few weeks and the current state of his brain might exacerbate his FTD. Maybe it will be stable by next week. I can only hope! But I have a feeling there will be no clear answers.
This recovery for Dave is tougher - he has some pain because of the location of the latest burr hole - his seizure medication has been changed to Keppra from Dilantin. He's pretty sleepy throughout the day. Moving very slowly. Watching everything he does so as not to exert any undue pressure on the brain - no bending over, no lifting or pushing or pulling. Just sitting. Better today then yesterday, but still seeming about three steps back from where he was.
Plan to post in two weeks after the visit with the neurologist, who I'm hoping will pull all this together for us so we can have a roadmap for the next month or two, bumpy as it might be, and filled with detours!
Tuesday, January 20, 2015
Friday, January 16, 2015
Chapter 21 Back to the tea party - AGAIN!
Dave had his follow up appointment on Wednesday with the neurosurgeon. His CT scan showed another subdural hematoma on the left side. Another surgery. Today he had a third burr hole drilled to remove this one. Brief consultation with the doctor afterwards - all went well - the surgery actually only took 22 minutes. That to me is amazing. The doctor did indicate that it is likely he'll need this again.....said we would discuss later. He has another CT scan tomorrow. Then we'll know more.
While the initial fall and seizures were separate from his FTDbv, this continued problem appears to be directly related to the brain atrophy. The neurosurgeon confirmed his atrophy is pretty severe. With all the room in there, the original bleed from Nov. 22 continues to drip. I wonder what this means - this can't be good for a compromised brain to be subjected to this pressure, to be pushed around in the skull to one side or the other, to be under anesthesia two times now in less then three weeks, and the possibility of more. He now has three holes in his head - and it would seem that these surgeries must be somewhat traumatic to the brain in and of themselves.
I've read recent articles on studies done regarding prognosis for those presenting with significant atrophy at the time of diagnosis. I don't know how the studies' ratings of "significant" compare with Dave's significant atrophy. Prognosis in the studies showed five years survival. In my mind, I wonder how long this can go on if this chronic subdural hematoma situation continues and how it might skew Dave's prognosis.
On the other hand, the only definitive diagnosis of FTD happens with biopsy at death. So all this worrying and wondering could be for nothing, right? He could have something else. And it's taken fourteen years to get to this point. I have contacted Dave's neurologist that diagnosed the FTD to make sure she knows about the last two months because we have an appointment with her Feb. 2, and I have a loooooooong list of questions!
It is what it is.
More later.
While the initial fall and seizures were separate from his FTDbv, this continued problem appears to be directly related to the brain atrophy. The neurosurgeon confirmed his atrophy is pretty severe. With all the room in there, the original bleed from Nov. 22 continues to drip. I wonder what this means - this can't be good for a compromised brain to be subjected to this pressure, to be pushed around in the skull to one side or the other, to be under anesthesia two times now in less then three weeks, and the possibility of more. He now has three holes in his head - and it would seem that these surgeries must be somewhat traumatic to the brain in and of themselves.
I've read recent articles on studies done regarding prognosis for those presenting with significant atrophy at the time of diagnosis. I don't know how the studies' ratings of "significant" compare with Dave's significant atrophy. Prognosis in the studies showed five years survival. In my mind, I wonder how long this can go on if this chronic subdural hematoma situation continues and how it might skew Dave's prognosis.
On the other hand, the only definitive diagnosis of FTD happens with biopsy at death. So all this worrying and wondering could be for nothing, right? He could have something else. And it's taken fourteen years to get to this point. I have contacted Dave's neurologist that diagnosed the FTD to make sure she knows about the last two months because we have an appointment with her Feb. 2, and I have a loooooooong list of questions!
It is what it is.
More later.
Saturday, January 10, 2015
Thursday, January 8, 2015
Chapter 20 The after party
Dave is home from the hospital. He was released on Friday afternoon. The drains were removed Friday morning. He's sporting a new hairstyle - a bald head with a little stubble - some railroad tracks made of staples on each side - and his full beard. He wears it well!
As usual (sad I would choose that word to use!), we have follow up appointments. One this week to get his blood taken to check his Dilantin levels, one next week with our primary care physician, and one with the neurosurgeon for a CT scan, get his staples removed, and find out if the bleed has clotted. No CT scan was done before he left the hospital - so I'm a little nervous. But I guess everything that could be drained had been drained. He is to wear a shower cap when showering to keep his wounds dry. I found one in a lovely polka dot pattern.
As usual (there's that word again!) he could not "take it easy." Was concerned about the towels not being done on Wednesday - I did them on Thursday! Did the trash and recycling make it out? He was checking the water in the Christmas tree, going up and down stairs, picking things up, throwing things away - including my winning ($3.00!) scratch lottery ticket and receipts from Christmas presents that I need. He did not like being told he needed to be careful. Saturday evening, he finally sat for awhile in a chair - he said he could feel something in his brain - not pain - just something pushing, or some pressure - I think it scared him a little - so I'm a little concerned about what might be going on. I tend to wish the follow up appointments would be sooner - at the same time, I don't want to hear any bad news. It was mentioned that his bleed may not clot and he may need to have the fluid drained periodically. I don't think I even want to know what that entails unless I need to know. Apparently, with brain shrinkage - which he definitely has - the veins and vessels in the brain kind of stretch and can thin because they are stretching across open spaces and are more likely to tear. He kept falling asleep in a chair on Sunday - his handheld game of Solitaire that he plays each and every day until he wins kept slipping out of his hands and falling to the floor.
It's now been almost a week since he got out. Things seem to be going well. Next Wednesday I'm hoping he gets a clean bill of health for now.
I've been doing some more research on FTD, particularly the behavior variant type. I'm now anxious for our regular follow up with our neurologist that diagnosed this disease. I can't believe we're coming up on six months. I notified her office of these two hospitalizations so she can review the record before our visit. These incidents seem significant enough that I'm wondering how they will impact his main diagnosis of frontotemporal degeneration. Which brings to mind another issue on his discharge papers from the hospital - his first set of discharge papers indicated FTD as a diagnosis along with the other issues from the fall. His second set of discharge papers DID NOT include it. In my mind, it is a significant enough medical issue that it should always be noted at the time of discharge so it can be considered in the overall discharge instructions and follow up care! If it was me being discharged a second hospitalization, one could make the assumption that I understand what I need to do to take care of myself. If that diagnosis is not noted for all members of a hospital care team to see, how can appropriate discharge planning take place for an individual with significant cognitive problems? It is a challenging state of affairs. This is probably repeating myself, but having been home with Dave for a good part of the last month and a half, I have noticed the depth of his deficits. I've seen more irritability - but that is probably in part due to two hospitalizations. There are little things - individually not much - but together - I don't know. Is it progression of the disease? Is it because his brain has been through the ringer the past month? Literally squished and pushed off center by a build up of blood and fluid? I don't know. We need the clean report on his CT and get past all this, and see what life is like a couple of months from now, all the while trying to make the best of today because he's the best he'll be right now.
I saw a great half an hour special called It Is What It Is - about FTD - interviews with four families and their struggles. There were so many moments in that short documentary that I could identify with - it was heart wrenching, but again, so comforting to know there are others out there going through this same thing, sharing this same experience. It is available on You Tube. I'm going to try to attach it to this blog for those who wish to watch it.
Along with all this, my dad is still hanging in there. I am blessed to have been able to spend afternoons with him, helping take "care" of him. It has been good. While I don't know how long he has - it's been quality time and I wouldn't trade it for anything.
More later.
As usual (sad I would choose that word to use!), we have follow up appointments. One this week to get his blood taken to check his Dilantin levels, one next week with our primary care physician, and one with the neurosurgeon for a CT scan, get his staples removed, and find out if the bleed has clotted. No CT scan was done before he left the hospital - so I'm a little nervous. But I guess everything that could be drained had been drained. He is to wear a shower cap when showering to keep his wounds dry. I found one in a lovely polka dot pattern.
As usual (there's that word again!) he could not "take it easy." Was concerned about the towels not being done on Wednesday - I did them on Thursday! Did the trash and recycling make it out? He was checking the water in the Christmas tree, going up and down stairs, picking things up, throwing things away - including my winning ($3.00!) scratch lottery ticket and receipts from Christmas presents that I need. He did not like being told he needed to be careful. Saturday evening, he finally sat for awhile in a chair - he said he could feel something in his brain - not pain - just something pushing, or some pressure - I think it scared him a little - so I'm a little concerned about what might be going on. I tend to wish the follow up appointments would be sooner - at the same time, I don't want to hear any bad news. It was mentioned that his bleed may not clot and he may need to have the fluid drained periodically. I don't think I even want to know what that entails unless I need to know. Apparently, with brain shrinkage - which he definitely has - the veins and vessels in the brain kind of stretch and can thin because they are stretching across open spaces and are more likely to tear. He kept falling asleep in a chair on Sunday - his handheld game of Solitaire that he plays each and every day until he wins kept slipping out of his hands and falling to the floor.
It's now been almost a week since he got out. Things seem to be going well. Next Wednesday I'm hoping he gets a clean bill of health for now.
I've been doing some more research on FTD, particularly the behavior variant type. I'm now anxious for our regular follow up with our neurologist that diagnosed this disease. I can't believe we're coming up on six months. I notified her office of these two hospitalizations so she can review the record before our visit. These incidents seem significant enough that I'm wondering how they will impact his main diagnosis of frontotemporal degeneration. Which brings to mind another issue on his discharge papers from the hospital - his first set of discharge papers indicated FTD as a diagnosis along with the other issues from the fall. His second set of discharge papers DID NOT include it. In my mind, it is a significant enough medical issue that it should always be noted at the time of discharge so it can be considered in the overall discharge instructions and follow up care! If it was me being discharged a second hospitalization, one could make the assumption that I understand what I need to do to take care of myself. If that diagnosis is not noted for all members of a hospital care team to see, how can appropriate discharge planning take place for an individual with significant cognitive problems? It is a challenging state of affairs. This is probably repeating myself, but having been home with Dave for a good part of the last month and a half, I have noticed the depth of his deficits. I've seen more irritability - but that is probably in part due to two hospitalizations. There are little things - individually not much - but together - I don't know. Is it progression of the disease? Is it because his brain has been through the ringer the past month? Literally squished and pushed off center by a build up of blood and fluid? I don't know. We need the clean report on his CT and get past all this, and see what life is like a couple of months from now, all the while trying to make the best of today because he's the best he'll be right now.
I saw a great half an hour special called It Is What It Is - about FTD - interviews with four families and their struggles. There were so many moments in that short documentary that I could identify with - it was heart wrenching, but again, so comforting to know there are others out there going through this same thing, sharing this same experience. It is available on You Tube. I'm going to try to attach it to this blog for those who wish to watch it.
Along with all this, my dad is still hanging in there. I am blessed to have been able to spend afternoons with him, helping take "care" of him. It has been good. While I don't know how long he has - it's been quality time and I wouldn't trade it for anything.
More later.
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