Anybody who would like to come help get the house ready for Sara is more than welcome. We could use all the help we can get.
We'll be working Saturday and Monday, and recharging on Sunday. (If I don't take a solid day off once a week I get all kinds of stupid and Sunday is already in my rhythm.)
I have a whole wall of post-it notes with jobs from cutting tags off of new towels for Sara, to mixing cement and everything inbetween. Some are specific to Sara's room and her, and some are general things that need to be done around the house while we're getting ready for her. I even have sewing projects and shopping lists (money provided) to complete.
Anyone who would like to just show up and help would be very much appreciated. Find a post-it note on the wall that's your speed and jump in. Where materials need to be purchased I have set aside some cash from savings to take care of it.
Thank You, Thank You, Thank You.
Kristina
Saturday, August 30, 2008
Thursday, August 28, 2008
The date is set (in clay)...LOL
September 9th is our target date to bring Sara home.
I met with Kaiser discharge planning yesterday and we are all moving and groving in the same direction. I had originally given them the 16th (so I wouldn't be running around with my hair on fire) but they want it sooner so we don't have to transfer her to subacute care.
So now i'm in a kind of panic mode. I know...take a breath...relax...make some lists...let other people help... After talking to them, and then Sara lastnight, all I could think about all night was what has to be done. :)
I'm so excited, though. Maybe just a tinge of scared - only because I don't want to miss something important. But I know that she's going to do great at home. I have every confidence in the people who are helping, our preparation, and in her. She wants this now more than anything. And the possibilities for her recovery once we can start working with her are exciting.
This is a three day weekend, so we will make a lot of headway this weekend. Anybody who wants to come over and help with the preparations is Welcome. I'll start making lists on yellow paper for different things and tape them up on the living room wall to make it easy. I also need to get the list up on the blog (or website...need to update it, too.) of things we still need. People have been asking me for the list and i've been so bad about posting it (ok...shy...a little embarrased for asking still...stupid pride thing.)
Anyway...she is doing well and happy. She is encouraged and can now actually start counting down. Team SARA is all done with the initial caregiver training. And we can start prepping to bring her home to Rohnert Park...to her friends and family...to the town she's grown up in...and to the community who has so kindly supported and encouraged our family through this. We have many, many blessings to count.
I met with Kaiser discharge planning yesterday and we are all moving and groving in the same direction. I had originally given them the 16th (so I wouldn't be running around with my hair on fire) but they want it sooner so we don't have to transfer her to subacute care.
So now i'm in a kind of panic mode. I know...take a breath...relax...make some lists...let other people help... After talking to them, and then Sara lastnight, all I could think about all night was what has to be done. :)
I'm so excited, though. Maybe just a tinge of scared - only because I don't want to miss something important. But I know that she's going to do great at home. I have every confidence in the people who are helping, our preparation, and in her. She wants this now more than anything. And the possibilities for her recovery once we can start working with her are exciting.
This is a three day weekend, so we will make a lot of headway this weekend. Anybody who wants to come over and help with the preparations is Welcome. I'll start making lists on yellow paper for different things and tape them up on the living room wall to make it easy. I also need to get the list up on the blog (or website...need to update it, too.) of things we still need. People have been asking me for the list and i've been so bad about posting it (ok...shy...a little embarrased for asking still...stupid pride thing.)
Anyway...she is doing well and happy. She is encouraged and can now actually start counting down. Team SARA is all done with the initial caregiver training. And we can start prepping to bring her home to Rohnert Park...to her friends and family...to the town she's grown up in...and to the community who has so kindly supported and encouraged our family through this. We have many, many blessings to count.
Monday, August 25, 2008
Moving right along...
Today marked progress on all fronts towards getting our girl home.
I've referenced Team SARA a few times. I should let people know who that actually is:
Daniel Hattem (Sara's boyfriend of 4+ years and an absolutely amazing young man).
Nancy Hattem (Daniel's mother and a dear friend of mine. She and I have shared the hells and the happinesses our children have lived through these last 10 months.)
Kelly Urenda (Sara's best friend Victoria's mother and a tireless friend of our family. We have taken turns being there for each others children over the years. Her "come on lets do what it takes" attitude helps fire me up.
Michael Baker (Sara's brother. He doesn't really want to be responsible to care for Sara, preferring to just be her brother, but I insisted since he and I will both be in the house with her. I told him that he has to be able to do the stuff to keep her alive, but not the nasty under the hood stuff...)
Mike Bartholomew (Sara's Dad. Even if I wanted to there is no way to keep him from wanting to take care of his girl. Those two have been nearly inseparable since she was 7 years old.
And me.
We may add more people to the core team, but we have to get started taking care of her first to see what else we need or need to know.
Progress coming along in the bathroom. Since Kelly and Nanci were at the hospital today I came straight home and worked on the bathroom. Still chasing the traces of mold through the bathroom I decided to pull the toilet and the cabinet. Found a huge colony of black mold spore behind there. When i hit it with the mold killing spray you could see it "poof", so I soaked the wall, cabinet, floor...yuck. So I made an executive decision and we're pulling up the underlayment, which also has mold. So, its a good move.
Kelly has floor tile and supplies I can use, and its much easier to do the shower and floor without everything else in the way. So i'll be putting in the blocking and doing the layout tomorrow, cutting the drain hole and connecting the new drain to the pipes. If I can find an anti-scald shower valve that works with both a hand shower and a wall shower then I may be putting that in tomorrow, too. If not, i'll get the lathe and deck mud in so it can cure overnight. And spray some more mold killer on everything...
I've referenced Team SARA a few times. I should let people know who that actually is:
Daniel Hattem (Sara's boyfriend of 4+ years and an absolutely amazing young man).
Nancy Hattem (Daniel's mother and a dear friend of mine. She and I have shared the hells and the happinesses our children have lived through these last 10 months.)
Kelly Urenda (Sara's best friend Victoria's mother and a tireless friend of our family. We have taken turns being there for each others children over the years. Her "come on lets do what it takes" attitude helps fire me up.
Michael Baker (Sara's brother. He doesn't really want to be responsible to care for Sara, preferring to just be her brother, but I insisted since he and I will both be in the house with her. I told him that he has to be able to do the stuff to keep her alive, but not the nasty under the hood stuff...)
Mike Bartholomew (Sara's Dad. Even if I wanted to there is no way to keep him from wanting to take care of his girl. Those two have been nearly inseparable since she was 7 years old.
And me.
We may add more people to the core team, but we have to get started taking care of her first to see what else we need or need to know.
Progress coming along in the bathroom. Since Kelly and Nanci were at the hospital today I came straight home and worked on the bathroom. Still chasing the traces of mold through the bathroom I decided to pull the toilet and the cabinet. Found a huge colony of black mold spore behind there. When i hit it with the mold killing spray you could see it "poof", so I soaked the wall, cabinet, floor...yuck. So I made an executive decision and we're pulling up the underlayment, which also has mold. So, its a good move.
Kelly has floor tile and supplies I can use, and its much easier to do the shower and floor without everything else in the way. So i'll be putting in the blocking and doing the layout tomorrow, cutting the drain hole and connecting the new drain to the pipes. If I can find an anti-scald shower valve that works with both a hand shower and a wall shower then I may be putting that in tomorrow, too. If not, i'll get the lathe and deck mud in so it can cure overnight. And spray some more mold killer on everything...
Things falling into place
Despite the recent challenges (and outright b.s.) of trying to take care of Sara and try and bring her home, we are making progress.
She and I talked a lot on Friday night. There is a lot going on that I'll be telling everyone about in the next few days. Some of it does not have to do with coming home, but related to her accident and injuries. She had some stuff to tell me and did a couple of weeks ago.
Regards bringing her home. I mentioned that there were decisions to be made regarding LVN nursing vs. RN nursing. The difference was the ability to actually GET nurses more than anything - and the hours that would be available for each level. We could either hold off for LVNs and have more hours but that could take weeks and she would probably have to go to subacute care in the interim...or we could opt for RN nursing and have nurses this week, but have less overall hours. She and I talked about it and she is ok with either. She wants to be home sooner, but worries about the extra burden on me and Team SARA. Given that a decision needs to be made, I have decided to opt for the RN care and get her home. I will be taking the brunt of the care hours outside of the RNs. I discussed with one of the doctors that she is not directly supervised right now, but on a monitor with alarm. Since that is acceptable (and effective) for monitoring her condition especially when she sleeps, I have arranged to rent the same kind of monitor. Neither Kaiser or MediCAL will authorize the monitor, so it is out of pocket. But it will give us the ability to let her sleep in her room alone but with her heartrate and oxygen saturation monitored for problems. Tracy and I had Christopher on a similar monitor when he was home (20 years ago). We'd go to sleep, too, but jump up and take care of him when the monitor went off. We'll be doing the same here. Since we have the spare bedroom upstairs and Michael and I are both at opposite ends of the house, it seems like the best thing to do would be to put a baby monitor system in her room (or near her wherever she is) as well, so that we can have a remote monitor with whoever is currently caring for her.
So, that, and finishing some modifications to the house, and figuring out a schedule for coverage is about all that is left to bring the girl home. (there is a bigger list than that...but we could do it at this point, just not gracefully and the girl would be wearing the hospital gown she traveled in...)
Her Dad asked her what the first thing she wanted when she got home...she spelled out Kitty. Kitty feels the same... I'm sure those two will spend the first few days just staring at each other.
Yesterday was 10 months since her accident. Ten months since she was even in the same house with her brother and me. How wonderful it will be to be able to lay my head on the pillow knowing that both of my babies are safe at home again....
She and I talked a lot on Friday night. There is a lot going on that I'll be telling everyone about in the next few days. Some of it does not have to do with coming home, but related to her accident and injuries. She had some stuff to tell me and did a couple of weeks ago.
Regards bringing her home. I mentioned that there were decisions to be made regarding LVN nursing vs. RN nursing. The difference was the ability to actually GET nurses more than anything - and the hours that would be available for each level. We could either hold off for LVNs and have more hours but that could take weeks and she would probably have to go to subacute care in the interim...or we could opt for RN nursing and have nurses this week, but have less overall hours. She and I talked about it and she is ok with either. She wants to be home sooner, but worries about the extra burden on me and Team SARA. Given that a decision needs to be made, I have decided to opt for the RN care and get her home. I will be taking the brunt of the care hours outside of the RNs. I discussed with one of the doctors that she is not directly supervised right now, but on a monitor with alarm. Since that is acceptable (and effective) for monitoring her condition especially when she sleeps, I have arranged to rent the same kind of monitor. Neither Kaiser or MediCAL will authorize the monitor, so it is out of pocket. But it will give us the ability to let her sleep in her room alone but with her heartrate and oxygen saturation monitored for problems. Tracy and I had Christopher on a similar monitor when he was home (20 years ago). We'd go to sleep, too, but jump up and take care of him when the monitor went off. We'll be doing the same here. Since we have the spare bedroom upstairs and Michael and I are both at opposite ends of the house, it seems like the best thing to do would be to put a baby monitor system in her room (or near her wherever she is) as well, so that we can have a remote monitor with whoever is currently caring for her.
So, that, and finishing some modifications to the house, and figuring out a schedule for coverage is about all that is left to bring the girl home. (there is a bigger list than that...but we could do it at this point, just not gracefully and the girl would be wearing the hospital gown she traveled in...)
Her Dad asked her what the first thing she wanted when she got home...she spelled out Kitty. Kitty feels the same... I'm sure those two will spend the first few days just staring at each other.
Yesterday was 10 months since her accident. Ten months since she was even in the same house with her brother and me. How wonderful it will be to be able to lay my head on the pillow knowing that both of my babies are safe at home again....
Friday, August 22, 2008
Team SARA is in Training.
The core care team for Sara has been training the last week on how to take care of her. We've been learning range of motion exercises, traech care, cleaning of the supplies, changing her breathing tube, suctioning, administering medication via her feeding tube, working the feeding pump and flushing lines, and draining and changing her foley (pee) bag.
Each person has been working independently with recuperative skills to get trained on a schedule that works for them, since there are repeat visits and demonstrations of skills that are required, as well.
Everybody seems to be doing well and only really needs practice to become comfortable. Sara indicated to me that she feels good seeing people come up to train. It tells her that home is getting closer.
I still have some nursing decisions and arrangements to make, but we are getting there. Still have to finish the bathroom (will make a lot of headway this weekend towards that), widen a couple of doorways, and finish the touchup and shelves in her room.
Part of our challenge has been finding LVN nursing coverage. If you know of any LVNs in the county that may want to pick up some extra hours and help out an absolutely fabulous young woman, let me know.
~~
She continues to do well and progress slowly. She is now able to, with a lot of encouragement, lift her head out of the "flopped forward" position, and slowly move back onto the pillow. That means that she now can move her head in all 4 directions (front, back, left, right.) She gets stronger at rotating her head shoulder to shoulder and will follow you around the room as you talk to her or if you come in. She can't be considered a tetraplegic anymore (unable to move 4 limbs and head/neck). I told her that she's got one down and 4 more to go...to which she just grins wide and blinks "Yes"!
Each person has been working independently with recuperative skills to get trained on a schedule that works for them, since there are repeat visits and demonstrations of skills that are required, as well.
Everybody seems to be doing well and only really needs practice to become comfortable. Sara indicated to me that she feels good seeing people come up to train. It tells her that home is getting closer.
I still have some nursing decisions and arrangements to make, but we are getting there. Still have to finish the bathroom (will make a lot of headway this weekend towards that), widen a couple of doorways, and finish the touchup and shelves in her room.
Part of our challenge has been finding LVN nursing coverage. If you know of any LVNs in the county that may want to pick up some extra hours and help out an absolutely fabulous young woman, let me know.
~~
She continues to do well and progress slowly. She is now able to, with a lot of encouragement, lift her head out of the "flopped forward" position, and slowly move back onto the pillow. That means that she now can move her head in all 4 directions (front, back, left, right.) She gets stronger at rotating her head shoulder to shoulder and will follow you around the room as you talk to her or if you come in. She can't be considered a tetraplegic anymore (unable to move 4 limbs and head/neck). I told her that she's got one down and 4 more to go...to which she just grins wide and blinks "Yes"!
hey there... look what showed up...
Yesterday I had the chance to visit Sara... it seemed that I needed a pick-me-up and some motivation from her... over the last few days I had to attend a funeral in Fresno and got the opportunity to visit with some of my family... on my drive back to civilization, I was talking to Kristina on the phone and she was telling me that Sara was finally in a regular med-surge room and its been a while since she had flowers... I remembered that she liked ducks and was up against a space restrictions. I was able to get special bouquet made, so this is what I ended up with... when I walked in her room, not only was she surprised to see me, I got one of the biggest smiles from her when she saw the duck and flowers...
Tuesday, August 19, 2008
Monday, August 18, 2008
Getting backed into the corner again
Well...after all the back and forth, planning and everything else, I am starting to get backed into a corner with Sara.
Friday I just didn't see it. The prepping me to back me up. We kept going back and forth about nurses, care team, santa rosa, walnut creek, yadda yadda. They told me that Santa Rosa wanted to make sure that we had an alternate for her that did not include acute care (hospital) or home, just in case. So, I agreed. After all...that's not going to happen. She's coming home.
Well, they got me.
Santa Rosa won't accept her. No way. No how. Kaiser is saying now that she doesn't need acute anymore or even licensed care, but supervision and some help. They said that sub-acute is where she needs to go, since we don't have family caregivers trained and nurses in place.
They said that as soon as they have a bed available in Healdsburg that she will move there, unless I object. In which case they issue a denial letter and I have to pay out of pocket from that day forward. Doesn't even matter that the level of care is 1:6+. Doesn't matter that it has been demonstrated, over and over, that too low a level of care and this child takes a dive.
So, I'm sitting here trying to figure out just what the heck happened.
The nursing service called and they have an option for nurses...if we cut the hours from (16hrs x 7days) for LVN to 16hrs x 5 days for an RN. Apparently it is easier to fill RN because the pay is higher and more RNs looking for hours. The problem is that then it leaves us without any care saturday and sunday and us having to cover all those hours. We just can't do that. Actually, I just can't do that. I am already going to take the M-F 8hr daily shift..I can't do it 7 days a week. And I can't ask too much of the people who are willing to help with her.
So, I got on the phone today (while driving to the hospital) and started calling foundations, brain injury support groups, anybody who could tell me if they had services to help me cover 16 hours each saturday and sunday. I even contacted Sonoma State's Nursing program to see if a final year nursing student would trade a room for the weekend hours.
Why does it have to be so freaking hard to bring her home? You'd think that hospitals, etc. would be all too willing to have you take a loved one home... I know that i'm asking for help with her from wherever I can get it from. To quote a song " I ain't too proud to beg".
I just still can't believe I let them dance me around AGAIN and into a corner.
Friday I just didn't see it. The prepping me to back me up. We kept going back and forth about nurses, care team, santa rosa, walnut creek, yadda yadda. They told me that Santa Rosa wanted to make sure that we had an alternate for her that did not include acute care (hospital) or home, just in case. So, I agreed. After all...that's not going to happen. She's coming home.
Well, they got me.
Santa Rosa won't accept her. No way. No how. Kaiser is saying now that she doesn't need acute anymore or even licensed care, but supervision and some help. They said that sub-acute is where she needs to go, since we don't have family caregivers trained and nurses in place.
They said that as soon as they have a bed available in Healdsburg that she will move there, unless I object. In which case they issue a denial letter and I have to pay out of pocket from that day forward. Doesn't even matter that the level of care is 1:6+. Doesn't matter that it has been demonstrated, over and over, that too low a level of care and this child takes a dive.
So, I'm sitting here trying to figure out just what the heck happened.
The nursing service called and they have an option for nurses...if we cut the hours from (16hrs x 7days) for LVN to 16hrs x 5 days for an RN. Apparently it is easier to fill RN because the pay is higher and more RNs looking for hours. The problem is that then it leaves us without any care saturday and sunday and us having to cover all those hours. We just can't do that. Actually, I just can't do that. I am already going to take the M-F 8hr daily shift..I can't do it 7 days a week. And I can't ask too much of the people who are willing to help with her.
So, I got on the phone today (while driving to the hospital) and started calling foundations, brain injury support groups, anybody who could tell me if they had services to help me cover 16 hours each saturday and sunday. I even contacted Sonoma State's Nursing program to see if a final year nursing student would trade a room for the weekend hours.
Why does it have to be so freaking hard to bring her home? You'd think that hospitals, etc. would be all too willing to have you take a loved one home... I know that i'm asking for help with her from wherever I can get it from. To quote a song " I ain't too proud to beg".
I just still can't believe I let them dance me around AGAIN and into a corner.
Sunday, August 17, 2008
Breathing on her own
Ok.
On Saturday, Sara did the coolest thing. She asked if she could have the oxygen Cup removed for a bit. She wanted to see how well she could breathe on her own. So I talked to the nurses and eventually to the RT and they said it would be good to give it a try. So I removed the cup and moved the monitor with Sara’s stats so she could see it. I told Sara that if she dropped below 95% oxygen saturation I was putting it back on. The game plan was to have her watch the monitor for 30 minutes while she tried to hold that range. Then move the monitor where she could not see it and still hold 95% for another 30 minutes. She watched the monitor like a hawk and regulated her breathing. She never took her eyes off of it. She stayed at 95 to 96 the entire 30 minutes. Then I moved the monitor behind her told her to watch TV and try to breathe as regular as she could. She did and the lowest she got was 92% but pretty much stayed at 95.
There were 4 nurses at the stations all watching to see if she could do it, and they cheered when she reached the 1 hour mark. There were a whole lot of people keeping a sharp eye on what she was doing. I talked to the RT and now we have a new game plan for the kid. She will spend the daytime off the oxygen supply and have it put back on at night for safety. They are worried her lungs might dry out at night without the mister in the oxygen supply. After last weekend’s issue with clots, I wasn’t going to argue that one.
So Sara is one step closer to recovery and getting the Trach out of her. I know that it will still be a while before that happens, but it’s another step closer. You should have seen the smile on her face when she did it. I should have taken a picture. I swear I don’t think sometimes.
I also meet the trainer today who has to sign us off for Sara’s in home care. She watched me change Sara’s trach pad, suction her, Work with the ER nurse to change her Feeding bad. She even watched me catch an issue with the feeding tree. The tree kept beeping an error. I checked all the lines and made sure everything was hung correctly and start it up again. It started to beep one more time. I then checked the clamp on Sara’s belly and it was closed. I opened it and restarted machine and it started working the way it should have. I think I earned brownie points towards getting signed off to take care of Sara :)
Anyway, unit next Saturday. Bye
On Saturday, Sara did the coolest thing. She asked if she could have the oxygen Cup removed for a bit. She wanted to see how well she could breathe on her own. So I talked to the nurses and eventually to the RT and they said it would be good to give it a try. So I removed the cup and moved the monitor with Sara’s stats so she could see it. I told Sara that if she dropped below 95% oxygen saturation I was putting it back on. The game plan was to have her watch the monitor for 30 minutes while she tried to hold that range. Then move the monitor where she could not see it and still hold 95% for another 30 minutes. She watched the monitor like a hawk and regulated her breathing. She never took her eyes off of it. She stayed at 95 to 96 the entire 30 minutes. Then I moved the monitor behind her told her to watch TV and try to breathe as regular as she could. She did and the lowest she got was 92% but pretty much stayed at 95.
There were 4 nurses at the stations all watching to see if she could do it, and they cheered when she reached the 1 hour mark. There were a whole lot of people keeping a sharp eye on what she was doing. I talked to the RT and now we have a new game plan for the kid. She will spend the daytime off the oxygen supply and have it put back on at night for safety. They are worried her lungs might dry out at night without the mister in the oxygen supply. After last weekend’s issue with clots, I wasn’t going to argue that one.
So Sara is one step closer to recovery and getting the Trach out of her. I know that it will still be a while before that happens, but it’s another step closer. You should have seen the smile on her face when she did it. I should have taken a picture. I swear I don’t think sometimes.
I also meet the trainer today who has to sign us off for Sara’s in home care. She watched me change Sara’s trach pad, suction her, Work with the ER nurse to change her Feeding bad. She even watched me catch an issue with the feeding tree. The tree kept beeping an error. I checked all the lines and made sure everything was hung correctly and start it up again. It started to beep one more time. I then checked the clamp on Sara’s belly and it was closed. I opened it and restarted machine and it started working the way it should have. I think I earned brownie points towards getting signed off to take care of Sara :)
Anyway, unit next Saturday. Bye
Saturday, August 16, 2008
Going to see Sara
I just wanted to post this. I will be seeing Sara this morning and spending the day with her like I do every Saturday. I don’t post much because I have a hard time putting into words what I see and feel when it comes to Sara. I am very protective of her and spend my days with her making sure she is comfortable and smiling.
I was there last Saturday when she had her breathing issues and stayed until it was time for her bath. Kristina gave me the honor of intrusting me with her care and giving the orders with the nurses and doctors. Kristina,Thank you. I am honored you trusted me that much with the care of someone so precious to us all. I wanted to write the post about the events of that day, but I couldn’t seem to put into word what had happened. I stared at my keyboard for an hour. I told Kristina latter on the phone, that I couldn’t separate feelings from fact. I don’t know how she does it.
Like I said, I am not much of a writer. On rare moments I can. I got an email from Sara a week ago and it was the highlight of my week. I want her home so I can see her more often. I know her friends want the same. We all are looking forward to the day she can come home and her family and friends can help her heal.
I know this post sound fragmented and convoluted, but it’s the best I can do for now. Will work on my communication skills! Until then, I will post when I can find the words.
I was there last Saturday when she had her breathing issues and stayed until it was time for her bath. Kristina gave me the honor of intrusting me with her care and giving the orders with the nurses and doctors. Kristina,Thank you. I am honored you trusted me that much with the care of someone so precious to us all. I wanted to write the post about the events of that day, but I couldn’t seem to put into word what had happened. I stared at my keyboard for an hour. I told Kristina latter on the phone, that I couldn’t separate feelings from fact. I don’t know how she does it.
Like I said, I am not much of a writer. On rare moments I can. I got an email from Sara a week ago and it was the highlight of my week. I want her home so I can see her more often. I know her friends want the same. We all are looking forward to the day she can come home and her family and friends can help her heal.
I know this post sound fragmented and convoluted, but it’s the best I can do for now. Will work on my communication skills! Until then, I will post when I can find the words.
Thursday, August 14, 2008
Monday, August 11, 2008
Monday a.m. check in.
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.
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.
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....
Subscribe to:
Posts (Atom)
