Sunday, February 10, 2008
Saturday and Dad
I got up to see Sara early this Saturday. I wanted to make it up to her for last weekend. I was very sick and could not be near her. With Sara on the ventilator, if she catches a bad cold, it could be really hard on her. Kristina had told her I spent a day in the hospital and Sara had been a little worried about me. But that all changed when I she saw me. I spent the entire day just being with her. We watched a few really bad movies and some cartoons together. Sara didn’t want to interact all that much. She just wanted to be with me. It was nice and I had missed her so much. I had a mask on just in case so I couldn’t give her a kiss or anything, but I made sure I held her hand. I made sure that she knew I loved her and was proud of her as always. 6 pm rolled around and I could tell Sara was starting to get tired. I turned off the TV and we turned off the lights. She wouldn’t go to sleep though. She kept looking over at me to make sure I was still there. I asked her after a while, “Are you going to stay awake unit I leave?” she said yes. I then asked if I should leave so she could get some rest, and she said yes. She loves her family and wont rest if there is someone there. I had to tear myself away. I didn’t want to leave. I knew she needed some rest and the right thing to do was to leave so she could.
Thursday, February 7, 2008
Sometimes you just have to laugh...
I'm rolling down the road, talking to my sister-in-law when all of the sudden my truck starts making pretty strange sounds. Hmm. This is not good. Then, it just stopped..broke down. I dropped the call with Kim and just started laughing. It all has just gotten to be so comical, so unbelievable.
Anyway...got towed to the nearest Ford dealership. Looks like the alternator. But I didn't get to go cuddle with Sara tonight. That's all she and I had planned for tonight. Maybe see if we could catch some TV like we used to.
She's doing really well. I love that smile of hers. That mischevous mind and the jokes she plays on people. What a turd...
So - I had a discharge planning meeting yesterday. Met with the woman who threatened the denial letter, and her boss, and our social worker. They went over what it would even take to bring her home. The manager was trying to scare me, but that doesn't scare me now. What scares me is people's bullshit - like what her employee slung at me for no reason. I did speak my mind to her during the meeting - and then dropped it.
So, anyway, they gave me a huge list of things to worry about. And, I reminded them that although I want nothing more than to bring her home, I'm not stupid. Desire and ability are still pretty far apart. I told them that until they have IN WRITING from me that she is coming home that they are to continue looking for a subacute nursing unit for her, with the goal of her going to inpatient rehab when she can handle it. They expained that the continuing issue is lack of beds, and then that most subacute nursing units are really for elder care. Yeah...like a 19 needs to bunk next to a 91 year old.
I asked them if Kaiser would put her someplace they didn't have a contract with at present, like Kentfield Rehab. They have a stepdown unit for people who aren't ready for the main program. I know it seems like I am all over the place with where she is going, and what to do with her. Honestly, I am. I just want her home. I just want her where I can get her the alternative treatment. But, for every want, there are 5 reasons why it isn't happening yet. Makes you just want to laugh to keep from burstin into tears. I'm pretty much all cried out, though. They come once in a while.
So, on the house front if I had good credit and no dogs I would have a place. But if I had good credit I would just buy a house and who would care if I had dogs. It became a little bit of a moot point yesterday, when I found out some of the physical requirements to bring Sara home on a ventilator. I have to have a gas generator installed in the house. I have to do other improvements to a place. Nobody renting would allow me to make those kinds of modifications to the house. And, my bright idea that I could just bring her here and take over the second floor for just her - nope. Can't do it. Can't have her above the ground floor without an elevator. That'yll never happen in this apartment. They get all pissy if you even ask about doing anything.
The plan - Kaiser is going to try and get her into Kentfield. I am going to work on fixing my credit. She is going to continue to make slow progress and work to get off the vent. Kaiser is going to find an appropriate place for her to be, or she stays in Sacramento. I'm going to keep working and going to see her, and trying to keep it all together. She is going to continue to work any muscle she can.
I talked to her about it for a long time last night. I felt as if I had failed her - having to tell her that I was just not finding a way to get her out of the hospital. She's been in the hospital over 100 days, more than a quarter of the year. She is more understanding about this than I am. She amazes me. I know she wants out, to be with her friends, near her cat, in the arms of her family. And she is more understanding about this than I am. I guess in her position you can either be understanding or tie yourself in knots like I am... I keep looking at the clock..hell, at the calendar...and knowing that the longer we have to wait the less effective the alternative treatment may be. That, right there, is hell for me.
Anyway - another regroup. There are still other things that need to happen before I can get her home and treatment and then therapy. And part of that is cleaning up part of the mess from my own life, my poor decisions. Then, at least my own crap won't stand in the way of my helping her.
i'm rambiling. i'm coming out of my skin right now. I'll go ahead and bounce off the walls until I go to sleep tonight, then wake up tomorrow all fresh and see what else can happen tomorrow....
Anyway...got towed to the nearest Ford dealership. Looks like the alternator. But I didn't get to go cuddle with Sara tonight. That's all she and I had planned for tonight. Maybe see if we could catch some TV like we used to.
She's doing really well. I love that smile of hers. That mischevous mind and the jokes she plays on people. What a turd...
So - I had a discharge planning meeting yesterday. Met with the woman who threatened the denial letter, and her boss, and our social worker. They went over what it would even take to bring her home. The manager was trying to scare me, but that doesn't scare me now. What scares me is people's bullshit - like what her employee slung at me for no reason. I did speak my mind to her during the meeting - and then dropped it.
So, anyway, they gave me a huge list of things to worry about. And, I reminded them that although I want nothing more than to bring her home, I'm not stupid. Desire and ability are still pretty far apart. I told them that until they have IN WRITING from me that she is coming home that they are to continue looking for a subacute nursing unit for her, with the goal of her going to inpatient rehab when she can handle it. They expained that the continuing issue is lack of beds, and then that most subacute nursing units are really for elder care. Yeah...like a 19 needs to bunk next to a 91 year old.
I asked them if Kaiser would put her someplace they didn't have a contract with at present, like Kentfield Rehab. They have a stepdown unit for people who aren't ready for the main program. I know it seems like I am all over the place with where she is going, and what to do with her. Honestly, I am. I just want her home. I just want her where I can get her the alternative treatment. But, for every want, there are 5 reasons why it isn't happening yet. Makes you just want to laugh to keep from burstin into tears. I'm pretty much all cried out, though. They come once in a while.
So, on the house front if I had good credit and no dogs I would have a place. But if I had good credit I would just buy a house and who would care if I had dogs. It became a little bit of a moot point yesterday, when I found out some of the physical requirements to bring Sara home on a ventilator. I have to have a gas generator installed in the house. I have to do other improvements to a place. Nobody renting would allow me to make those kinds of modifications to the house. And, my bright idea that I could just bring her here and take over the second floor for just her - nope. Can't do it. Can't have her above the ground floor without an elevator. That'yll never happen in this apartment. They get all pissy if you even ask about doing anything.
The plan - Kaiser is going to try and get her into Kentfield. I am going to work on fixing my credit. She is going to continue to make slow progress and work to get off the vent. Kaiser is going to find an appropriate place for her to be, or she stays in Sacramento. I'm going to keep working and going to see her, and trying to keep it all together. She is going to continue to work any muscle she can.
I talked to her about it for a long time last night. I felt as if I had failed her - having to tell her that I was just not finding a way to get her out of the hospital. She's been in the hospital over 100 days, more than a quarter of the year. She is more understanding about this than I am. She amazes me. I know she wants out, to be with her friends, near her cat, in the arms of her family. And she is more understanding about this than I am. I guess in her position you can either be understanding or tie yourself in knots like I am... I keep looking at the clock..hell, at the calendar...and knowing that the longer we have to wait the less effective the alternative treatment may be. That, right there, is hell for me.
Anyway - another regroup. There are still other things that need to happen before I can get her home and treatment and then therapy. And part of that is cleaning up part of the mess from my own life, my poor decisions. Then, at least my own crap won't stand in the way of my helping her.
i'm rambiling. i'm coming out of my skin right now. I'll go ahead and bounce off the walls until I go to sleep tonight, then wake up tomorrow all fresh and see what else can happen tomorrow....
Wednesday, February 6, 2008
Wait... what?
For those who don't know, Sara drove a 1987 Oldsmobile Custom Cruiser, in this sort of metallic baby blue color. It was a pretty sweet car. It was long, wide, but not very tall. This thing earned the nicknames "Yacht" and "Tank", and Sara even named it "Maria", which she got because Maria is pretty similar to Mar, which is the spanish word for ocean, if I'm not mistaken.
Anywho, back in January (pretty early Jan), mom said she saw another Custom Cruiser in our drivway. Same colour, same model, etc. I didn't believe her. She showed me a picture. I was still in disbelief. Here it was, a car that on her cellphone screen looks exactly like Maria.
Well, I just got home today. I look in the driveway for our complex and I see, in the same spot Sara would park in, the same car that mom saw. She wasn't lying.
Some pictures:
(They're thumbnails. Click them.)
So yeah. Not really relative to anything too horribly important, but still kind of interesting.
-Mike
Anywho, back in January (pretty early Jan), mom said she saw another Custom Cruiser in our drivway. Same colour, same model, etc. I didn't believe her. She showed me a picture. I was still in disbelief. Here it was, a car that on her cellphone screen looks exactly like Maria.
Well, I just got home today. I look in the driveway for our complex and I see, in the same spot Sara would park in, the same car that mom saw. She wasn't lying.
Some pictures:
(They're thumbnails. Click them.)
So yeah. Not really relative to anything too horribly important, but still kind of interesting.
-Mike
We didn't get the house...
I am so bummed...actually in tears. We didn't get the ideal house. There was plenty of room for me to setup a nice treatment room for her and everything. Basically, didn't get it because of my credit and the fact I have dogs. It just sucks. I have the best trained dogs I know, they don't stink, don't tear things up, don't bark excessively. Yeah, my credit is crap. Did that to myself directly and indirectly, but my bad none-the-less. If I had good credit I would be buying a house instead of trying to rent/lease one. I've just got a discharge planning meeting in 3 hours and have now wasted a week on this house and have no place to land. This just delays other treatments more...
Ok...enough self-pity, disappointment and tears. Back onto Craigs list...
Ok...enough self-pity, disappointment and tears. Back onto Craigs list...
Tuesday, February 5, 2008
A few days rest...
I'm sorry if I kept people in suspense with what has been going on. It overwhelmed me pretty hard and I needed to settle my mind for a few days. That's also why no updates in a few days.
Sara is doing great. The nurses on the ward are always saying how amazing she is and how hard headed she is. They are right on both accounts. She continues to slowly do what they said she never would.
Most notably today...they reduced her ventilator pressure support again, by 2 points. That means she is down to 10. She only needs to get to 6 before we can start doing some sponteneous breathing trials (SBT). An SBT is where they basically just pull the vent tubes off her traecheostomy and she breathes room air on her own via the tube. They typically cover the traech with a light cover filter. Then, after a period of time, they remove the inner cannula from her throat, and let the hole close up. I have to tell you...if she can get off the ventilator that would be HUGE. On the vent she only has about 6 years to live - off the vent she can live 40+.
On the discharge front - I have a meeting tomorrow with the discharge planners. Basically, our social worker got the hospital back in line with regards to what we're doing. The MediCAL program does pay the nursing, but they didn't tell me that I had to apply for it - it is not automatic. So I researched everything for that and am doing the application. I also, obviously had to get going on finding a place to live. The other day when all this came to a head I left work and that's all I did. I found the perfect place for us. Single story, plenty of space for a wheelchair to navigate - a large combination living/dining space I can turn into a hospital room and therapy room to accomodate her. Place to put my home office for consulting and working from home. Family room to gather in. Open kitchen. I think it would be the perfect place to bring her home to and help rehabilitate her. It will also be nice to have space for her friends to come by and hang out with her. Her social needs have been barely met, but that is most understandable. I should find out today whether or not I got the house. Cross your fingers.
Otherwise, I have just been working, cleaning the house, and playing air traffic controller. I've gone to see her a couple of times since all this happened - but I missed a few nights. My sweet boyfriend covered for me, and expained to Sara that Mom was getting beat up a bit around the edges and needed to sleep. And that is exactly what I did - came home from work, napped, got up, worked, went to bed. He's been real good about trying to get the positive back in my speak...as my being negative about anything is a pretty good indicator that I am discouraged.
So...moving on, I got to get back to work. Rested, encouraged, able to be there for Sara and Michael...
Daniel is going up to the hospital today to surprise her and hang out on a Tuesday. I can just imagine the big smile...
Sara is doing great. The nurses on the ward are always saying how amazing she is and how hard headed she is. They are right on both accounts. She continues to slowly do what they said she never would.
Most notably today...they reduced her ventilator pressure support again, by 2 points. That means she is down to 10. She only needs to get to 6 before we can start doing some sponteneous breathing trials (SBT). An SBT is where they basically just pull the vent tubes off her traecheostomy and she breathes room air on her own via the tube. They typically cover the traech with a light cover filter. Then, after a period of time, they remove the inner cannula from her throat, and let the hole close up. I have to tell you...if she can get off the ventilator that would be HUGE. On the vent she only has about 6 years to live - off the vent she can live 40+.
On the discharge front - I have a meeting tomorrow with the discharge planners. Basically, our social worker got the hospital back in line with regards to what we're doing. The MediCAL program does pay the nursing, but they didn't tell me that I had to apply for it - it is not automatic. So I researched everything for that and am doing the application. I also, obviously had to get going on finding a place to live. The other day when all this came to a head I left work and that's all I did. I found the perfect place for us. Single story, plenty of space for a wheelchair to navigate - a large combination living/dining space I can turn into a hospital room and therapy room to accomodate her. Place to put my home office for consulting and working from home. Family room to gather in. Open kitchen. I think it would be the perfect place to bring her home to and help rehabilitate her. It will also be nice to have space for her friends to come by and hang out with her. Her social needs have been barely met, but that is most understandable. I should find out today whether or not I got the house. Cross your fingers.
Otherwise, I have just been working, cleaning the house, and playing air traffic controller. I've gone to see her a couple of times since all this happened - but I missed a few nights. My sweet boyfriend covered for me, and expained to Sara that Mom was getting beat up a bit around the edges and needed to sleep. And that is exactly what I did - came home from work, napped, got up, worked, went to bed. He's been real good about trying to get the positive back in my speak...as my being negative about anything is a pretty good indicator that I am discouraged.
So...moving on, I got to get back to work. Rested, encouraged, able to be there for Sara and Michael...
Daniel is going up to the hospital today to surprise her and hang out on a Tuesday. I can just imagine the big smile...
Quick note for peace of mind
I realize that some of you may still be concerned about the long post Kristina made a few days ago regarding the discharge lady threatening to revoke Sara's medical coverage. I would just like to let people know that the issue as been dealt with and is now no longer a threat to Sara's care. Sorry for the suspense.
Sunday, February 3, 2008
Sunday Update 2/3/08
Sara continues to do well. Sara is being as much her self as she can be in her condition, which is quite a bit. Now when she choughs or strains, her hands and arms start to move. It's not voulentary, but at least those nerve connections are being used on a more regular basis again.
I spent much of today's visit cuddled up next to Sara in her hosptial bed, either reading, talking, or sleeping. She also let me swab out her mouth a bit because her breath smelt (ok, so she's not actually breathing out of her mouth, but when she smiles and laughs, some air gets moved around in there)
The only new thing medicly I found out about was information on that rash mentioned a while back. Apparently it is "resolving". I figure that means its going away and is not a threat to anything. But I never did find out exactly what it was. Other then that, nothing new.
~Daniel H.
I spent much of today's visit cuddled up next to Sara in her hosptial bed, either reading, talking, or sleeping. She also let me swab out her mouth a bit because her breath smelt (ok, so she's not actually breathing out of her mouth, but when she smiles and laughs, some air gets moved around in there)
The only new thing medicly I found out about was information on that rash mentioned a while back. Apparently it is "resolving". I figure that means its going away and is not a threat to anything. But I never did find out exactly what it was. Other then that, nothing new.
~Daniel H.
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