Just called the hospital. She's doing well. Sleeping. She is staying up all night watching TV.
I'm going to take Daniel's suggestion and have the TV turned off at midnight. If she is sleeping she doesn't get PT or the cardiac chair in the morning. Both are beneficial to her.
I will be checking throughout the day and talking to them about our options going forward.
Monday, August 11, 2008
Tired Indeed
She really was worn out. When I got there this afternoon She was asleep. Her eyes fluttered a bit when I walked in. She saw me for a moment and then went right back to sleep. I decided to set up my Xbox so we could watch more of "Heros" when she woke up, only to find that part of my power cord was missing. The last time I had used it was last sunday, so I walked upstairs to 3 north and asked one of the nurses if they had found a power cord in her old room. Turns out it was still in there. Fortunate for me I guess. But it worries me that they couldn't identify this thing as not part of their own equipment. Anyway, I went back down to Sara's room in the ICU and read my book for about 2 hours before she finally woke up.
The smile she gave me was wonderful. I asked if she was still tired, she said no. I talked to her and showered her with kisses for a while before we started up watching "Heros" again. I love watching movies with my girlfriend, but Honestly, I'm a little worried about the amount of TV she watches now. (I guess its just how I was raised) I know she doesn't have much of anything else to do, but I feel she isn't focusing on her own body if she's watching TV. Which may be a good thing anyway, but it's something I think about often. As a result, I asked the Nurse to be sure to turn off the TV before she went off shift at midnight. Sleep is important, And if the TV doesn't get turned off, Sara will stay up all night watching it. Hopefully she will sleep well tonight.
~Daniel H.
The smile she gave me was wonderful. I asked if she was still tired, she said no. I talked to her and showered her with kisses for a while before we started up watching "Heros" again. I love watching movies with my girlfriend, but Honestly, I'm a little worried about the amount of TV she watches now. (I guess its just how I was raised) I know she doesn't have much of anything else to do, but I feel she isn't focusing on her own body if she's watching TV. Which may be a good thing anyway, but it's something I think about often. As a result, I asked the Nurse to be sure to turn off the TV before she went off shift at midnight. Sleep is important, And if the TV doesn't get turned off, Sara will stay up all night watching it. Hopefully she will sleep well tonight.
~Daniel H.
Sunday, August 10, 2008
wow... look at you... Sara...
Well... it’s been along time... I had the chance to visit Sara since she's moved to Kaiser Walnut Creek... from
I hope anyone and everyone that has taken the time to read this Blog about Sara… just understand that life is precious, and like Sara who is living life everyday… we should stop and think how grateful we are to have her in our lives… Please share it with everybody you know… and yes… SARA you’re still a knucklehead…!!!
She's fine now, but...
Sara had one of the hardest days in months yesterday.
I was awakened by a phone call from Dr. Hospitalist to tell me what had "just happened" with Sara. I started shaking before he even started telling me.
"She went into respiratory distress this morning. Sweating profusely, struggling so hard to breathe, and was very agitated. Her vital signs were significantly changed and she was getting really scared. She de-SAT'd (her oxygen saturation went down...supposed be 100%) first into the mid 80's then down into the low 70's. We had multiple RTs and her nurse in the room working with her. The lead RT has worked with Sara before and he was trying to calm her stroking her forehead, but she was way too agitated to calm, so we gave her some Ativan to calm her and make it easier for her. It took us about 30 minutes of bagging and suctioning her before her SATs climbed up and stayed up. They would pop up for a few minutes then go back down the whole time. Then once we were able to clear the mucus plug and her SATs stayed up I decided to put her on the ventilator. Want to just provider her some pressure support. She's exhausted and we gave her the Ativan, so we just want to give her a rest and let her recover from this episode"
I asked him if he had asked her if she wanted the ventilator, which he said No. I asked him to go and ask her and also ask her if she wanted me there. (Her dad was on his way for Saturday visit). The doctor called me back in a few minutes and told me that she indicated she was OK with the ventilator and she did want me there. I told him we'd be there in an hour and a half and hung up.
We arrived to find her still in 3N, on the ventilator. A quick check of what was hanging (on IV poles), the vent settings and putting my hands and eyes on Sara told me the story of how she was at that moment. It was obvious she was relieved to see me (although brother and father had diverted from going home to go make sure she was OK and getting what she needed until I could get there. Her brother, according to one nurse, was amazing. Communicating with her, stroking her head and looking into her eyes, making sure people were communicating with her. She noted a deep bond between the two of them.)
After talking to Sara for a few minutes and getting to the heavy sigh of relief state the manager of the unit came to see me. I'll spare the details of the conversation, as it would be redundant. Same concerns and objections I've always had. Same resolve not to let them do it again. Same tasking the manager who wanted to make the situation "right" by telling him to just help us get her home...
He also told me, which I had already noted, that she was being ventilated with a rhythm. In simple terms, that means she was not supporting her own life functions, breathing. I asked him if she knew that, which he said no.
I walked over to the bed and looked into her eyes. I asked her questions to see if she understood what was going on and what condition she was in at that moment. I asked her if she knew that she was being kept alive by the ventilator, and she said No. I told her that she was, that she was right then unable to breathe on her own. She indicated OK. I asked her if she wanted to be on the ventilator right now for this reason and she indicated Yes.
I explained to her what this means in terms of setback and how we have to quickly get her back off this vent. I told her that days on the vent can mean the difference between this being a temporary setback or never getting off the vent again. She understood.
We spent several hours there. I talked to her mainly, but also RTs, Nurses, the doctor. Before we left we had a plan of attack for this episode.
Sara needed rest. The entire ordeal had exhausted her to the point she couldn't maintain her own fuctions, that was clear. She's also a knuckleheaded teenager who refuses to close her eyes and rest. So we were going to have to force her. We asked the doctor to order her something to actually knock her out for the night. The risks to her were VERY minimal, as she was already on the vent. He agreed. He also stated he wanted her off as soon as possible. We talked about ways this has happened before and how to mitigate a repeat. And how to get her off the vent as quickly as possible.
So, lastnight at 8pm they gave her a real good bath. The RTs did all of the ordered treatments and worked at length with her, both before and after the lift team moved her (in case moving her dislodged some secretions that would travel). Then, at 10pm they turned off the TV and administered Versed to her, to make her sleep. She was nitey nite not long after.
She passed a very uneventful night - but I still kept checking every few hours anyway.
This morning she woke up just after 8am and they had initially planned on taking her to pressure support then trying to take her off the vent a day later...but she exceeded what they thought she'd do and they ended up pulling her off the vent entirely.
So, she took a deep nosedive for less than 24 hours and managed to pull up just in time. She's still pretty tired today, nappy, sleepy. But that is normal for her for days. While we can drug her to make her eyes close, the only thing that brings her strength and brightness back is several days of rest.
Daniel is on his way to see her now, and spend the day. She'll love it. I know he'll just crawl in bed with her and they will nap.
Better than what the doctor ordered...
I was awakened by a phone call from Dr. Hospitalist to tell me what had "just happened" with Sara. I started shaking before he even started telling me.
"She went into respiratory distress this morning. Sweating profusely, struggling so hard to breathe, and was very agitated. Her vital signs were significantly changed and she was getting really scared. She de-SAT'd (her oxygen saturation went down...supposed be 100%) first into the mid 80's then down into the low 70's. We had multiple RTs and her nurse in the room working with her. The lead RT has worked with Sara before and he was trying to calm her stroking her forehead, but she was way too agitated to calm, so we gave her some Ativan to calm her and make it easier for her. It took us about 30 minutes of bagging and suctioning her before her SATs climbed up and stayed up. They would pop up for a few minutes then go back down the whole time. Then once we were able to clear the mucus plug and her SATs stayed up I decided to put her on the ventilator. Want to just provider her some pressure support. She's exhausted and we gave her the Ativan, so we just want to give her a rest and let her recover from this episode"
I asked him if he had asked her if she wanted the ventilator, which he said No. I asked him to go and ask her and also ask her if she wanted me there. (Her dad was on his way for Saturday visit). The doctor called me back in a few minutes and told me that she indicated she was OK with the ventilator and she did want me there. I told him we'd be there in an hour and a half and hung up.
We arrived to find her still in 3N, on the ventilator. A quick check of what was hanging (on IV poles), the vent settings and putting my hands and eyes on Sara told me the story of how she was at that moment. It was obvious she was relieved to see me (although brother and father had diverted from going home to go make sure she was OK and getting what she needed until I could get there. Her brother, according to one nurse, was amazing. Communicating with her, stroking her head and looking into her eyes, making sure people were communicating with her. She noted a deep bond between the two of them.)
After talking to Sara for a few minutes and getting to the heavy sigh of relief state the manager of the unit came to see me. I'll spare the details of the conversation, as it would be redundant. Same concerns and objections I've always had. Same resolve not to let them do it again. Same tasking the manager who wanted to make the situation "right" by telling him to just help us get her home...
He also told me, which I had already noted, that she was being ventilated with a rhythm. In simple terms, that means she was not supporting her own life functions, breathing. I asked him if she knew that, which he said no.
I walked over to the bed and looked into her eyes. I asked her questions to see if she understood what was going on and what condition she was in at that moment. I asked her if she knew that she was being kept alive by the ventilator, and she said No. I told her that she was, that she was right then unable to breathe on her own. She indicated OK. I asked her if she wanted to be on the ventilator right now for this reason and she indicated Yes.
I explained to her what this means in terms of setback and how we have to quickly get her back off this vent. I told her that days on the vent can mean the difference between this being a temporary setback or never getting off the vent again. She understood.
We spent several hours there. I talked to her mainly, but also RTs, Nurses, the doctor. Before we left we had a plan of attack for this episode.
Sara needed rest. The entire ordeal had exhausted her to the point she couldn't maintain her own fuctions, that was clear. She's also a knuckleheaded teenager who refuses to close her eyes and rest. So we were going to have to force her. We asked the doctor to order her something to actually knock her out for the night. The risks to her were VERY minimal, as she was already on the vent. He agreed. He also stated he wanted her off as soon as possible. We talked about ways this has happened before and how to mitigate a repeat. And how to get her off the vent as quickly as possible.
So, lastnight at 8pm they gave her a real good bath. The RTs did all of the ordered treatments and worked at length with her, both before and after the lift team moved her (in case moving her dislodged some secretions that would travel). Then, at 10pm they turned off the TV and administered Versed to her, to make her sleep. She was nitey nite not long after.
She passed a very uneventful night - but I still kept checking every few hours anyway.
This morning she woke up just after 8am and they had initially planned on taking her to pressure support then trying to take her off the vent a day later...but she exceeded what they thought she'd do and they ended up pulling her off the vent entirely.
So, she took a deep nosedive for less than 24 hours and managed to pull up just in time. She's still pretty tired today, nappy, sleepy. But that is normal for her for days. While we can drug her to make her eyes close, the only thing that brings her strength and brightness back is several days of rest.
Daniel is on his way to see her now, and spend the day. She'll love it. I know he'll just crawl in bed with her and they will nap.
Better than what the doctor ordered...
Wednesday, August 6, 2008
Tuesday...sleeping baby girl
I got the numbers of the people I needed to call at Kaiser yesterday. I couldn't get it together to call them. Everytime I tried the circuit breakers would go and i'd start to nod off. Since I was driving to see Sara at the time I decided maybe I just wasn't ready.
On the way I did get a call from ContinuingCare-Kathy. She is a supervisor for the department and decided that due to the complexity of Sara's case and discharge arrangements that she would handle it herself through the remainder of Sara's stay in Walnut Creek. What a relief. It has gotten so hard to continually train and retrain discharge planners on the details of her case. This woman has taken it upon herself to become intimately familiar with those details.
She said that while I push on K-SR (Kaiser Santa Rosa) that they would continue trying to get Sara home. Good plan.
She also had more questions for me regarding Sara's benefits. She wanted to know about Sara's StepMom and the Kaiser, about the MediCAL, her SSI, etc.
Later, while I was actually at the hospital, she called again. This time, it was about caregiver training. Up for the next change/hurdle? NOW they say they want all of us individually trained and signed off on caring for Sara. So, now I need to get Team Sara the info to call in and schedule times, etc. They also want (at least) me to do a 12 hour solo shift with her - doing everything.
I will talk to Kaiser Santa Rosa today. If we can get her moved to there then the potential nurses from Maxim can meet her. When recruiting for caregivers, we have a MUCH better chance of nurses wanting to work with Sara (even with the lower MediCAL pay) if they've had a chance to meet her. And with KSR not wanting to have her there until we have nurses staffed we have the classic catch-22.
Team SARA (family caregiver team): Look for an email later today after I get the details of what they want each of us to do.
Circle of Friends (Sara's close friends): I'm putting up the shelves in her room this week. Her room will be ready for people to come by and help decorate starting this weekend. I'm also sending all of you her email address. She'd love to hear from you and she's working hard on responding - even short responses. She is getting much better on the computer. Before long you all will be chatting like before.
Tower of Time: On behalf of Sara I would like to give a huge THANK YOU for the collective donation from the artists. The donation has been set aside specifically to purchase a new interface for her computer that will allow her to try and get back to her artwork. She is very excited about it. You'll see her chatting online before that time comes, but she knows that she'll get there. Donating the proceeds from artwork commission sales (ranging from $5 to $50) the ToT family has raised over $1000 for her.
Creating artwork has been one of the greatest joys of her life. Sara started drawing very young and has volumes and volumes of sketchbooks of anime characters and original artwork.
When I came in last night she was sleeping. So pink and peaceful. With the exception of the surroundings and the tube in her neck you wouldn't know anything was different with her. I like to see her rest. I know that in sleep the brain is allowed to heal, and in dreams none of this exists...
On the way I did get a call from ContinuingCare-Kathy. She is a supervisor for the department and decided that due to the complexity of Sara's case and discharge arrangements that she would handle it herself through the remainder of Sara's stay in Walnut Creek. What a relief. It has gotten so hard to continually train and retrain discharge planners on the details of her case. This woman has taken it upon herself to become intimately familiar with those details.
She said that while I push on K-SR (Kaiser Santa Rosa) that they would continue trying to get Sara home. Good plan.
She also had more questions for me regarding Sara's benefits. She wanted to know about Sara's StepMom and the Kaiser, about the MediCAL, her SSI, etc.
Later, while I was actually at the hospital, she called again. This time, it was about caregiver training. Up for the next change/hurdle? NOW they say they want all of us individually trained and signed off on caring for Sara. So, now I need to get Team Sara the info to call in and schedule times, etc. They also want (at least) me to do a 12 hour solo shift with her - doing everything.
I will talk to Kaiser Santa Rosa today. If we can get her moved to there then the potential nurses from Maxim can meet her. When recruiting for caregivers, we have a MUCH better chance of nurses wanting to work with Sara (even with the lower MediCAL pay) if they've had a chance to meet her. And with KSR not wanting to have her there until we have nurses staffed we have the classic catch-22.
Team SARA (family caregiver team): Look for an email later today after I get the details of what they want each of us to do.
Circle of Friends (Sara's close friends): I'm putting up the shelves in her room this week. Her room will be ready for people to come by and help decorate starting this weekend. I'm also sending all of you her email address. She'd love to hear from you and she's working hard on responding - even short responses. She is getting much better on the computer. Before long you all will be chatting like before.
Tower of Time: On behalf of Sara I would like to give a huge THANK YOU for the collective donation from the artists. The donation has been set aside specifically to purchase a new interface for her computer that will allow her to try and get back to her artwork. She is very excited about it. You'll see her chatting online before that time comes, but she knows that she'll get there. Donating the proceeds from artwork commission sales (ranging from $5 to $50) the ToT family has raised over $1000 for her.
Creating artwork has been one of the greatest joys of her life. Sara started drawing very young and has volumes and volumes of sketchbooks of anime characters and original artwork.
When I came in last night she was sleeping. So pink and peaceful. With the exception of the surroundings and the tube in her neck you wouldn't know anything was different with her. I like to see her rest. I know that in sleep the brain is allowed to heal, and in dreams none of this exists...
Tuesday, August 5, 2008
Going to make my case directly to Kaiser Santa Rosa
I requested the names and phone numbers of the parties at Santa Rosa who were making the decisions. Today I got a call from Walnut Creek with that information.
The names are sitting right here on a post-it note. I should have already been on the phone reasoning them into a corner. But i'm so overwhelmed and tired that my safeties are firing. My safeties are in place for when its just too much for me to face soemthing. I get really, really sleepy and have to go lie down somewhere. Kind of akin to situational narcolepsy. I just go nitey-nite sometimes.
Well, right now i'm sitting here on the edge of it. Exhausted from all the back and forth so far and swimmy headed from the thought of going over all the details, reasons, etc. for them to help Sara. I have to sell them on helping her. I just can't imagine anybody not jumping through fire to do just that. Lord knows there are plenty of us who are willing to...
The names are sitting right here on a post-it note. I should have already been on the phone reasoning them into a corner. But i'm so overwhelmed and tired that my safeties are firing. My safeties are in place for when its just too much for me to face soemthing. I get really, really sleepy and have to go lie down somewhere. Kind of akin to situational narcolepsy. I just go nitey-nite sometimes.
Well, right now i'm sitting here on the edge of it. Exhausted from all the back and forth so far and swimmy headed from the thought of going over all the details, reasons, etc. for them to help Sara. I have to sell them on helping her. I just can't imagine anybody not jumping through fire to do just that. Lord knows there are plenty of us who are willing to...
Monday, August 4, 2008
Kaiser Santa Rosa rejects Sara
it made it to the CEO level between the two hospitals (meaning it became a business decision) and they have decided not to accept Sara. So our hopes of getting her close while MediCAL stuff gets straightened out had come to a screeching halt. Sara is understandably upset and cried out of frustration. All she wants now is to be home.
I talked to the discharge planner who told me the news. She said that SR doesn't want to give her an ICU bed, even though she does't need it. They are not confident that they can adequately care for her on their ward. They made this decision after making me provide them with what our discharge plans were for AFTER Santa Rosa. They were not confident that the MediCAL budget affecting nursing availability thing would sort itself out and they'd get stuck with her.
Then the discharge planner said she wanted to talk about other alternatives...sub-acute care specifically. I told her no way, especially after Santa Rosa rejected Sara. Why on earth would I send my daughter to another sub-acute care facility when an actual acute care facility said they werent' sure they could take adequate care of her? People need to learn how to reason. I seem to be the only person who is sure we can take adequate care of her, with the proper help. We've been there every day for her and slowly built up confidence in our skills with her care, and her improvements.
So, there we are. I talked to the nursing service and they interviewed another nurse today. They have 5 other interviews for this week, trying to get people to fill positions specifically to care for Sara. Maxim asked the district manager for a rate increase for the nurses, and it was not approved. They can't cut their margin for this one case, because then they would be compelled to cut it for others. In all actuality, all people in need of care are worthy of it. I understand they can't say any one case is more important than the other with the kind of work they do.
On a much better note - Sabrina and her Dad, Scott, have been building the ramp. It is awesome and we can't express enough gratitude for their help. Kelly and her family have donated a bunch of tiling supplies and the use of their tile tools when I get started on the shower. They are also going to help out on some clothes for Sara and Michael. Thank you to everyone who has come out to help, or offer loving support in other ways. We'll get there. We'll get her home....
I talked to the discharge planner who told me the news. She said that SR doesn't want to give her an ICU bed, even though she does't need it. They are not confident that they can adequately care for her on their ward. They made this decision after making me provide them with what our discharge plans were for AFTER Santa Rosa. They were not confident that the MediCAL budget affecting nursing availability thing would sort itself out and they'd get stuck with her.
Then the discharge planner said she wanted to talk about other alternatives...sub-acute care specifically. I told her no way, especially after Santa Rosa rejected Sara. Why on earth would I send my daughter to another sub-acute care facility when an actual acute care facility said they werent' sure they could take adequate care of her? People need to learn how to reason. I seem to be the only person who is sure we can take adequate care of her, with the proper help. We've been there every day for her and slowly built up confidence in our skills with her care, and her improvements.
So, there we are. I talked to the nursing service and they interviewed another nurse today. They have 5 other interviews for this week, trying to get people to fill positions specifically to care for Sara. Maxim asked the district manager for a rate increase for the nurses, and it was not approved. They can't cut their margin for this one case, because then they would be compelled to cut it for others. In all actuality, all people in need of care are worthy of it. I understand they can't say any one case is more important than the other with the kind of work they do.
On a much better note - Sabrina and her Dad, Scott, have been building the ramp. It is awesome and we can't express enough gratitude for their help. Kelly and her family have donated a bunch of tiling supplies and the use of their tile tools when I get started on the shower. They are also going to help out on some clothes for Sara and Michael. Thank you to everyone who has come out to help, or offer loving support in other ways. We'll get there. We'll get her home....
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