I got the word yesterday that they consider Sara ready to move to her next phase of care. Kaiser is looking for a step down unit for her - basically a ventilator managment subacute care facility. I, on the other hand, are looking for a stroke rehabilitation unit that will accept her and are willing to look at other stroke treatments for her.
I had a wonderful conversation with the medical director from the Alta Bates Stroke Unit. We're trying to see if there can be a spot there for Sara, and access to some of the advanced treatments that may help her. We are too soon to know any possibility, but I have made solid contact with program managers.
Sara's MediCAL card came in the mail the other day. When I took a copy to Kaiser they acted a little like I was handing them a yummy fried pork chop. I understand that medicine is a business and Kaiser is going to now try and get me to move her to a skilled nursing facility and then drop her from Kaiser. I have to stay on top of this to make sure they don't get the opportunity and keep Medi-CAL as her secondary insurance.
This is our medical system in operation... You can get really fine care, tip-top nursing - but only if you have insurance...and only if the insurance company doesn't drop you after starting to pay for fine care, and tip-top nursing. And, as I have recently found out, the benefits provided by the federal government and state are enough to keep you basically alive, but don't mess up the paperwork or forget to send something in on time...
I offered to switch places with Sara yesterday, after telling her all of this. She said "No." That should tell you something...
Wednesday, January 9, 2008
Tuesday, January 8, 2008
Subtle ventilator changes and no more collar!
Yesterday morning was Sara's ventilator weaning test. I met with Dr. Intensivist and he planned to reduce the ventilator support for her and see how she did.
The first try, when she was laying down, didn't go so well. Actually, she was fine, but he didn't like a couple of the numbers coming back from the vent. So, we decided to wait until she was up in the cardiac chair for another try.
After getting into the chair he reduced her support from 15 to 12. (with the goal being 6 before bringing her off the ventilator onto breathing totally on her own.) For about 45 minutes she was breathing a little fast and a little shallow, but not in any discomfort and her oxygen saturations were stable. Then, she took a deep breath and fell into a nice 18-22 breaths per minute rate with very good volumes and stabilized. She didn't do it herself - her body got the message that something had changed and adjusted accordingly. After watching over her for well over an hour, I called her stable enough for me to go to work. She was fine with that, as everything was ok. Her Grandma spent the day with her, watching movies and watching over her, so we could both be sure she was ok.
Dr. Intensivist wrote an order that when she goes back to bed they increase the pressure support back to 15 so she doesn't labor while trying to rest. She showed no indication of laboring breathing, even after going back to bed at 12 for over a half hour. The order now will be lower pressure support while upright, and higher when reclined, until her tidal volumes get higher while reclined. I guess it is like interval training for the lungs.
Still, multiple times yesterday I heard from the doctor that he wasn't sure she'd ever get off the vent. Seeing as how she is doing many things they said she'd never be able to do, my money is still on Sara...
Monday, January 7, 2008
Good News
So I had a Wonderful supprise when I went into Sara's room this afternoon. I opend the door, and her collar was off. Not just the front of it, but the whole thing. I asked the nurse, and she said that they had removed it yesterday while she was in bed, but put it on while in the cardiac chair. Today she had it off both in bed and in the chair. I asked Sara if she was more comfortable with the collar off. She gave me an immidiate "Yes". So this is a big improvement for her, at least comfort wise. I was a little too excited to explore the medical implications of what it means however.
Other then her collar comming off, I was able to figure out what book she wants me to read next. It took a while though, because she couldn't figure out how to spell it. (I dont really know either, but i was able to figure out by why it looked like it sounded..... like.... er....) I basically asked if I could take a guess at the title, and I got it right. Its another J.R.R Tolkien book. (Hence the hard to spell name) "The Silmarillion" Is what she was trying for. So I'll start reading that to her next time I'm up there hopefully.
Because her collar was off, she was able to smile a lot. So that was nice. I just talked to her for a few hours and rubbed lotion into her feet. It was a short visit but it was a good one. She was tired from being up in the cardiac chair when I left. So hopefully She will sleep well.
~Daniel H.
Other then her collar comming off, I was able to figure out what book she wants me to read next. It took a while though, because she couldn't figure out how to spell it. (I dont really know either, but i was able to figure out by why it looked like it sounded..... like.... er....) I basically asked if I could take a guess at the title, and I got it right. Its another J.R.R Tolkien book. (Hence the hard to spell name) "The Silmarillion" Is what she was trying for. So I'll start reading that to her next time I'm up there hopefully.
Because her collar was off, she was able to smile a lot. So that was nice. I just talked to her for a few hours and rubbed lotion into her feet. It was a short visit but it was a good one. She was tired from being up in the cardiac chair when I left. So hopefully She will sleep well.
~Daniel H.
Saturday, January 5, 2008
Sara smiles for her daddy!
Sara and Tracy shared some smiles over an article called "What's Your Doggie Made Of?" in People Magazine. Example: "Chinese shar-pei, pug, chow chow--We'd Call It a ... "Chug Chow.". She also endured several of his corny jokes--and even smiled at the punch lines!
We looked at the "Best Dressed" article (her favorites were J Lo and Halle Berry), and "The Year in Babies".
Her new letter board is much easier to work with--the contrast is better and the letters easier to see. The accompanying whiteboard helps to keep track and verify what she has spelled, too.
Friday, January 4, 2008
Stormy Friday
what a blustery day...raining sidewise...reminds me of Alaska...
Sara stayed inside today. LOL...of course she did...
She had a real easy day. I talked with her doctors this morning and discussed her care, plan for the next few days, etc. We all agreed to stop messing with the ventilator and let her build up some strength.
Dr. Intensivist and I discussed how and when to do pressure support/ventilator changes. I explained that it wasn't just that I wanted to be there for me to watch...I need to be there because it scares the hell out of Sara and she wants me there. He totally understood and put himself in my place as a parent and said he wouldn't want his son to go through that without him, either.
So - Monday I will be at the hospital when they round in the morning, and they are going to do a ventilator reduction and breathing test. I'll have a chance to prepare her for it (like not springing it on her-which she really dislikes) and calm her during. If you've ever seen Sara scared during this, you know that she locks onto my eyes and listens to my voice. She KNOWS that I won't get all wound up unless there is good reason to be, so she relaxes and calms down. We've been through some exercise induced asthma attacks and she knows to just listen to my voice, trust me, and breath like I tell her. We'll test to see if she can do it now. My bet is that she can.
Now - that being said - this is only going to be a 2 to 5 point reduction in her ventilator pressure support. That can FEEL like a lot to her, but still plenty of support. She is on a relatively high level of vent pressure support (15lbs/H20) and he'd like to see if she can tolerate 13lbs or even 10lbs. She did not tolerate 13lbs the other day, but that was within 24 hours of starting to breathe on her own, too. We agreed that she's still pretty weak in the chest muscles and needs a chance to work back. Unfortunately, coughing is rough on her, but has been helping her build up more breath strength and muscle tone in the chest.
In the interim, she will be visited by her father and stepmom - Tracy and Denise - and her boyfriend Daniel. I'll try and go up if my sore throat lets up. I have strep throat and am probably not still contagious, but feeling like gutter crud. (I bathed in alcohol gel and wore a mask when seeing Sara yesterday...and didn't go today or day before yesterday.) Luckily, I haven't gotten anybody else sick around me, as i've been VERY careful.
So all is as well as can be - resting happening all around - working not to get any worse - letting her gather strength and heal. Monday will start the first full week of the New Year..and the first weekly goal.
Sara stayed inside today. LOL...of course she did...
She had a real easy day. I talked with her doctors this morning and discussed her care, plan for the next few days, etc. We all agreed to stop messing with the ventilator and let her build up some strength.
Dr. Intensivist and I discussed how and when to do pressure support/ventilator changes. I explained that it wasn't just that I wanted to be there for me to watch...I need to be there because it scares the hell out of Sara and she wants me there. He totally understood and put himself in my place as a parent and said he wouldn't want his son to go through that without him, either.
So - Monday I will be at the hospital when they round in the morning, and they are going to do a ventilator reduction and breathing test. I'll have a chance to prepare her for it (like not springing it on her-which she really dislikes) and calm her during. If you've ever seen Sara scared during this, you know that she locks onto my eyes and listens to my voice. She KNOWS that I won't get all wound up unless there is good reason to be, so she relaxes and calms down. We've been through some exercise induced asthma attacks and she knows to just listen to my voice, trust me, and breath like I tell her. We'll test to see if she can do it now. My bet is that she can.
Now - that being said - this is only going to be a 2 to 5 point reduction in her ventilator pressure support. That can FEEL like a lot to her, but still plenty of support. She is on a relatively high level of vent pressure support (15lbs/H20) and he'd like to see if she can tolerate 13lbs or even 10lbs. She did not tolerate 13lbs the other day, but that was within 24 hours of starting to breathe on her own, too. We agreed that she's still pretty weak in the chest muscles and needs a chance to work back. Unfortunately, coughing is rough on her, but has been helping her build up more breath strength and muscle tone in the chest.
In the interim, she will be visited by her father and stepmom - Tracy and Denise - and her boyfriend Daniel. I'll try and go up if my sore throat lets up. I have strep throat and am probably not still contagious, but feeling like gutter crud. (I bathed in alcohol gel and wore a mask when seeing Sara yesterday...and didn't go today or day before yesterday.) Luckily, I haven't gotten anybody else sick around me, as i've been VERY careful.
So all is as well as can be - resting happening all around - working not to get any worse - letting her gather strength and heal. Monday will start the first full week of the New Year..and the first weekly goal.
Pushing the vent
I couldn't make it up yesterday to see Sara, so my sweetheart Don went by. I had a training session to give over the Internet and a project depending on it.
Don has this great way about him. Although he is a well-spoken, educated man he can be a big warm teddy bear. He's been around Sara, indirectly, for the past 3 years. He has never been interested, nor have I for that matter, been interested in him participating in the raising of my children. But he is a significant part of my life, as are my children, so paths do cross. Invariably, there is laughter. Don has this way of taking his easy manner, and quick wit, and poking fun at and with about anybody. It is no less the case with my kids.
So, when he gets around Michael they start playing two big dudes crashing into each other. Each one nudging and taunting the other the way that buddies do.
When he gets around Sara they trade silliness and poking fun at or pulling my leg. But he can always make her laugh, even when she doesn't want to.
The fact that he is able to make her laugh now, about anything and everything, is truly great. I know that when I can't get there he will go see her for me, and give her a familiar face to grin at. I'm sure that when she is again able to talk that I will hear all about it. But for now, it makes her smile and that's all that matters.
I found out today that they changed her over from a ventilation rate to spontaneous ventilation again = so she is breathing on her own, and triggering the ventilator. She is on pressure support, and it is actually fairly minimal. She went to spontaneous yesterday after being on full support since Christmas Day. But today, for some reason, the doctors decided to try and take her off the ventilator. Well, it didn't work. Too much too fast. I guess they saw how well she tolerated going back to triggering the ventilator herself and decided after seeing her push the ventilator at a good rate that she was ready. Well, she was clearly not.
I have a problem with this, as they have done a vent off test yet again without me there. I have told them that I want to be there. Sara has blinked agreement that she wants me there. It is written in her chart. And still they pull her off, watch her struggle to breathe, and put her back on. I am not there to encourage her, comfort her, reassure her afterwards. It is always apparent to me when they have been monkeying with her breathing, as she is drenched with sweat from working so hard, and gets scared when ever she even seems to have an issue starting.
I'm calling her main doctors tomorrow to see if they can get it through their heads that I am serious that I want to be there and not to try another vent off without me there. I also want to check when they are going to start working on getting the collar off her. it has been 9 weeks now. So, we'll see after tomorrow what the (coordinated) plan is for the next week...
As for the special for today - her Grandmother spent a few hours with her. They watched Stargate SG1 and just hung out. Sara really seems to enjoy it. I'll let Sande tell you all about it...
Don has this great way about him. Although he is a well-spoken, educated man he can be a big warm teddy bear. He's been around Sara, indirectly, for the past 3 years. He has never been interested, nor have I for that matter, been interested in him participating in the raising of my children. But he is a significant part of my life, as are my children, so paths do cross. Invariably, there is laughter. Don has this way of taking his easy manner, and quick wit, and poking fun at and with about anybody. It is no less the case with my kids.
So, when he gets around Michael they start playing two big dudes crashing into each other. Each one nudging and taunting the other the way that buddies do.
When he gets around Sara they trade silliness and poking fun at or pulling my leg. But he can always make her laugh, even when she doesn't want to.
The fact that he is able to make her laugh now, about anything and everything, is truly great. I know that when I can't get there he will go see her for me, and give her a familiar face to grin at. I'm sure that when she is again able to talk that I will hear all about it. But for now, it makes her smile and that's all that matters.
I found out today that they changed her over from a ventilation rate to spontaneous ventilation again = so she is breathing on her own, and triggering the ventilator. She is on pressure support, and it is actually fairly minimal. She went to spontaneous yesterday after being on full support since Christmas Day. But today, for some reason, the doctors decided to try and take her off the ventilator. Well, it didn't work. Too much too fast. I guess they saw how well she tolerated going back to triggering the ventilator herself and decided after seeing her push the ventilator at a good rate that she was ready. Well, she was clearly not.
I have a problem with this, as they have done a vent off test yet again without me there. I have told them that I want to be there. Sara has blinked agreement that she wants me there. It is written in her chart. And still they pull her off, watch her struggle to breathe, and put her back on. I am not there to encourage her, comfort her, reassure her afterwards. It is always apparent to me when they have been monkeying with her breathing, as she is drenched with sweat from working so hard, and gets scared when ever she even seems to have an issue starting.
I'm calling her main doctors tomorrow to see if they can get it through their heads that I am serious that I want to be there and not to try another vent off without me there. I also want to check when they are going to start working on getting the collar off her. it has been 9 weeks now. So, we'll see after tomorrow what the (coordinated) plan is for the next week...
As for the special for today - her Grandmother spent a few hours with her. They watched Stargate SG1 and just hung out. Sara really seems to enjoy it. I'll let Sande tell you all about it...
Tuesday, January 1, 2008
Into the New Year
I went up to see Sara yesterday. She was both in good shape and good spirits. Don and I spent some time with her, joking and smiling about various goofy things.
I told her that I was glad that 2007 was coming to a close. Although the whole year had been going fairly well, the way it ended (with her accident, et al...) left us on the downward side. I told her how proud I was of her, for how she had grown and lived in this past year - good job, handling her own finances, starting school, improving her relationship with her brother. I told her that I was amazed by her as a person, able to come back so far so quickly from something so dire. I told her that we would keep working to help her and that the new year meant a new start.
I told her that starting in 2008 we were going to start setting weekly goals - ones that we would decide on together and work towards each week. She answered yes. She'd continue her physical therapy, and we continue working on communication and speech therapy. If her goal was to "wake up" her brain, then this was how we were going to do it. I told her that amazing things have happened to people, and who knows if she will be one of them. It will take her working. She's ready. She's been enjoying the therapy with Rachel, and has shown improvement.
I spent most of the day with her today. We cuddled, and I talked to her. She preferred to just listen to me talk about things familiar to her outside fo the hospital. And I rubbed lotion into her hands and feet, then gave her a whole body rub. She was in heaven. Then we curled up on her bed and took a nap. Well, until MY legs started to cramp. Then I got up and futzed around her room and cleaned until she started grinding her teeth at me. Taking my cue, I told her that she should go back to sleep and I was going to venture home, to which she answered yes.
You can see so much expression in her face now. Her forehead, cheeks, lips and chin are all moving, expressing. OH...and when they suctioned her this afternoon...she localized to it, and to painful stimuli. That is significant, as she has been unable to localize to pain since her stroke.
There are two postures for reaction, localization and decerebration. Localization is you ball up your fist and pull your arms in. Decerebration is you extend away from the pain, pushing arms and legs out. And then there is no reaction at all - where stimuli yields no reaction at all. During her stroke, she stopped localizing and became decerebrate - and that showed it was damaging her brain stem. By the time they took her down to surgery at Davis, she flexed completely away. This is what lead doctors to believe that her brain stem was totally gone.
Well, now she's localizing, after two months of no reaction at all. And THAT is significant. I told her that I was thrilled - I hadn't been looking for any changes. Just letting her cruise and rest - but her brainstem is showing us that stuff is going on the right direction inside her brain. I'll take it.
Welcome to 2008. Welcome to uncharted territory and unknown possibilities for Sara, and for us all.
I told her that I was glad that 2007 was coming to a close. Although the whole year had been going fairly well, the way it ended (with her accident, et al...) left us on the downward side. I told her how proud I was of her, for how she had grown and lived in this past year - good job, handling her own finances, starting school, improving her relationship with her brother. I told her that I was amazed by her as a person, able to come back so far so quickly from something so dire. I told her that we would keep working to help her and that the new year meant a new start.
I told her that starting in 2008 we were going to start setting weekly goals - ones that we would decide on together and work towards each week. She answered yes. She'd continue her physical therapy, and we continue working on communication and speech therapy. If her goal was to "wake up" her brain, then this was how we were going to do it. I told her that amazing things have happened to people, and who knows if she will be one of them. It will take her working. She's ready. She's been enjoying the therapy with Rachel, and has shown improvement.
I spent most of the day with her today. We cuddled, and I talked to her. She preferred to just listen to me talk about things familiar to her outside fo the hospital. And I rubbed lotion into her hands and feet, then gave her a whole body rub. She was in heaven. Then we curled up on her bed and took a nap. Well, until MY legs started to cramp. Then I got up and futzed around her room and cleaned until she started grinding her teeth at me. Taking my cue, I told her that she should go back to sleep and I was going to venture home, to which she answered yes.
You can see so much expression in her face now. Her forehead, cheeks, lips and chin are all moving, expressing. OH...and when they suctioned her this afternoon...she localized to it, and to painful stimuli. That is significant, as she has been unable to localize to pain since her stroke.
There are two postures for reaction, localization and decerebration. Localization is you ball up your fist and pull your arms in. Decerebration is you extend away from the pain, pushing arms and legs out. And then there is no reaction at all - where stimuli yields no reaction at all. During her stroke, she stopped localizing and became decerebrate - and that showed it was damaging her brain stem. By the time they took her down to surgery at Davis, she flexed completely away. This is what lead doctors to believe that her brain stem was totally gone.
Well, now she's localizing, after two months of no reaction at all. And THAT is significant. I told her that I was thrilled - I hadn't been looking for any changes. Just letting her cruise and rest - but her brainstem is showing us that stuff is going on the right direction inside her brain. I'll take it.
Welcome to 2008. Welcome to uncharted territory and unknown possibilities for Sara, and for us all.
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