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.
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