Today was a nice visit for me. Sara is doing well. She laughed at me when I walked in because I accedently walked past her room. I gave her some updates on what myself and our friends have been up to recently and I showed her a piece of art that one of her Tower of Time friends made for her. After that I set up my Xbox and we set to watching the first few episodes of "Heros". I got it for her for christmas because she loved the show, and we are just now getting to watching it.
I was actually pleased with our new nurse encounter today. This guy was actually interested in Sara's condition and how she got that way. I replied to questions with Sara's permission. The guy was supprised, he thought she was paralyzed from the neck down and had no sensation in her arms or legs. Sara started laughing at the guy, and he laughed back at her. I went through a bit of physical therapy stuff with him to demonstrate her capabilities. He was also interested in how she communicates and actually asked questions and practiced with Sara and I. I was very pleased with the whole encounter.
Sara pulled a sort of joke on me as I was getting ready to leave today. I asked her if she needed anything before I left. Her response was "D-O-S". this confused me. I immedatly jumped to D.O.S., which is an old computer application. I asked if it was an abreveation or an acronym or something. She said no. I asked her if it was a reffrence to something. She said no. I asked if it was something I should know, she said Yes. After a few minutes of me going back over all those things. I just asked her to try again. this time she spelled out "Two" and then it clicked. Oooooh, 'Dos' as in spanish for two! She laughed at me as I lauged at myself. I totally wasn't suspecting her to start spelling in spanish. It was something we used to do often, she would say things in spanish, and I would do my best to reply in japanese. It mostly ended in me saying "what?" or "I don't understand." After I took care of the two things, I left her watching Comedy Central. I think that little joke will keep me smiling for a few days at least :)
~Daniel H.
Sunday, June 29, 2008
Getting better on computer
Sara and I have been working a lot on her computer. She's getting better at navigating and we've been working on some other functions, as well.
She's starting to send out emails to the friends and family already on her contact list. This is currently just her circle of friends and a few family members.
If you are an Internet friend (ToT, LJ, chat) and would like to start sending her emails directly please email me at kbconsults (at) gmail.com. I'll put you in her contact list and give you her email address, too. The only reason I do not post it here is I am cautious about "other people" contacting her with opinions and unkind words. (yes, I have gotten them...rarely,but they shook me.)
We are still having a little trouble with her response function, but she's receiving just fine. Please don't send anything with attachments or links, as she cannot navigate to open those. You can send them directly to me and i'll show her on my computer. You can send a picture embedded in the email, like a funny one her grandmother sent her the other day... Length of the email does not matter, nor does font. The computer can actually "read" them out loud to her if she cannot see it well.
She still doesn't really know what to say to people after so long. Just give her a little time and help and she'll be chattering away in no time.
She's starting to send out emails to the friends and family already on her contact list. This is currently just her circle of friends and a few family members.
If you are an Internet friend (ToT, LJ, chat) and would like to start sending her emails directly please email me at kbconsults (at) gmail.com. I'll put you in her contact list and give you her email address, too. The only reason I do not post it here is I am cautious about "other people" contacting her with opinions and unkind words. (yes, I have gotten them...rarely,but they shook me.)
We are still having a little trouble with her response function, but she's receiving just fine. Please don't send anything with attachments or links, as she cannot navigate to open those. You can send them directly to me and i'll show her on my computer. You can send a picture embedded in the email, like a funny one her grandmother sent her the other day... Length of the email does not matter, nor does font. The computer can actually "read" them out loud to her if she cannot see it well.
She still doesn't really know what to say to people after so long. Just give her a little time and help and she'll be chattering away in no time.
Her room is painted...
I painted Sara's room today. Got rid of that generic eggshell off-white. Painted the ceiling ultra pure white and the walls Soldier Blue, like she wanted. It is a very "bright" room. The blue is so alive but not overwhelming. With the bright white ceiling and white trim her room is really quite beautiful. She wants me to put up shelves all around the perimeter of the room, so her friends can decorate her room and she can have all of her stuff out where she can see it.
Sara has always had an interesting room. She only keeps stuff that means something to her and has always liked to have it out where she could see it. Not really one for collecting and storing things.
With the shelves going up high, she'll be able to see her stuff, but we will still have floor space to move around and transfer her to and from bed. And there is still plenty of wall space for artwork, pictures, and other items. I'm looking forward to Daniel being able to hang up the documentation for his Christmas present to her last year. He had a star named for her. He has a nice certificate and a star map of where "Glory" is located in the sky. He loves her so much. And she loves him just as much. I truly enjoy being able to witness my daughter loving and being loved like what they have.
I had to be the first person to hang something up in there, though. Yeah, probably a little selfish. But, hey, I'm Mom. I can do that. I'm sure it will get moved. I hung up one of her windsock Japanese fish, like the one that used to hang off the end of her car. When we moved in here I also hung one up in front of the house. I don't know why. I just thought she'd like it. I found the fish at a country store in Bodega. I think when I saw them there I imagined that she got hers there with her friends on the way to Bodega Bay. Never occured to me to ask her until just now.
I'm waiting to call the ICU until shift change is done. She ended up not having any visitors today, because her Dad (Mike) was sick. He apparently left me a message a few days ago that I didn't get, so I didn't get the day covered. I feel bad because I could have gone. I hate leaving her alone for a day. But I'm going to call up there and ask the nurse to pass her a message from me (they won't forward the phone after 9pm). Tell her that her Dad is fine, just sick, and I didn't know until this evening or I would have come.
Medically she's been doing very well. The fires here in California have been killing air quality, and even inside the hospital you can feel it and taste it. It has affected her breathing, along with the rest of us, but she's fine.
Sara has always had an interesting room. She only keeps stuff that means something to her and has always liked to have it out where she could see it. Not really one for collecting and storing things.
With the shelves going up high, she'll be able to see her stuff, but we will still have floor space to move around and transfer her to and from bed. And there is still plenty of wall space for artwork, pictures, and other items. I'm looking forward to Daniel being able to hang up the documentation for his Christmas present to her last year. He had a star named for her. He has a nice certificate and a star map of where "Glory" is located in the sky. He loves her so much. And she loves him just as much. I truly enjoy being able to witness my daughter loving and being loved like what they have.
I had to be the first person to hang something up in there, though. Yeah, probably a little selfish. But, hey, I'm Mom. I can do that. I'm sure it will get moved. I hung up one of her windsock Japanese fish, like the one that used to hang off the end of her car. When we moved in here I also hung one up in front of the house. I don't know why. I just thought she'd like it. I found the fish at a country store in Bodega. I think when I saw them there I imagined that she got hers there with her friends on the way to Bodega Bay. Never occured to me to ask her until just now.
I'm waiting to call the ICU until shift change is done. She ended up not having any visitors today, because her Dad (Mike) was sick. He apparently left me a message a few days ago that I didn't get, so I didn't get the day covered. I feel bad because I could have gone. I hate leaving her alone for a day. But I'm going to call up there and ask the nurse to pass her a message from me (they won't forward the phone after 9pm). Tell her that her Dad is fine, just sick, and I didn't know until this evening or I would have come.
Medically she's been doing very well. The fires here in California have been killing air quality, and even inside the hospital you can feel it and taste it. It has affected her breathing, along with the rest of us, but she's fine.
Saturday, June 28, 2008
The Diving Bell and the Butterfly
Sara and I watched The Diving Bell and the Butterfly last night. We had wanted to together but only decided a few days ago we were ready.
It is a beautiful movie. The imagery and photography is stunning, and in some places a little unnerving.
I asked Sara if the opening sequence, where he is starting to open his eyes, is similar to her experience. She gave me a long slow "yes". I asked her if it disturbed her to watch this and she said "no". I asked her if she wanted to go on and she said "yes". I said to her "your experience is a little different...he was in a coma the whole time and woke up, eyes open, into locked-in. you were awake and hearing, but not able to open your eyes yet." she said "yes". I said "you must have been so scared.." and she replied "yes". I kept talking to you, right from your accident, didn't I? "yes" Do you remember me you I could feel that you were there? "yes" You were calling me, weren't you? "yes" You knew I would find you... and she smiled and blinked "yes". I'm so glad I listened... "yes". We held hands and looked into each others eyes for a long moment. We do that often...always have. And then I smiled too.
I told her that I was scared too, that I wasn't really feeling her and just being hopeful, until I opened her eyes up the first time after finding out she was locked-in, and seeing her looking at me and responding to me. I can't describe the feeling of knowing that your child is there and finding out that you were right. I don't know how, but I've always been connected to my children - some mental thread connecting us...I've had it with all three of my children.
I use past tense only because of my first born, Christopher. (9/12/87-5/27/88)
She and I went back to watching the movie. Paused a few times to make sure she still wanted to keep going, which she did. I asked her afterwards if she wanted to talk about it, the movie. "yes". Do you want to do it now? "no" I understood that. I really didn't want to talk about the rest of it then, either. I think there are some things to internalize.
I did tell her that it is still just as rare, and still just as understood a syndrome as it was 11 years ago. But that we learn every day something new, her and I. And she is so amazing and inspiring to me - her determination to heal and recover, not just linger. And to that she smiled, and nodded her head "yes". Exactly the point...
It is a beautiful movie. The imagery and photography is stunning, and in some places a little unnerving.
I asked Sara if the opening sequence, where he is starting to open his eyes, is similar to her experience. She gave me a long slow "yes". I asked her if it disturbed her to watch this and she said "no". I asked her if she wanted to go on and she said "yes". I said to her "your experience is a little different...he was in a coma the whole time and woke up, eyes open, into locked-in. you were awake and hearing, but not able to open your eyes yet." she said "yes". I said "you must have been so scared.." and she replied "yes". I kept talking to you, right from your accident, didn't I? "yes" Do you remember me you I could feel that you were there? "yes" You were calling me, weren't you? "yes" You knew I would find you... and she smiled and blinked "yes". I'm so glad I listened... "yes". We held hands and looked into each others eyes for a long moment. We do that often...always have. And then I smiled too.
I told her that I was scared too, that I wasn't really feeling her and just being hopeful, until I opened her eyes up the first time after finding out she was locked-in, and seeing her looking at me and responding to me. I can't describe the feeling of knowing that your child is there and finding out that you were right. I don't know how, but I've always been connected to my children - some mental thread connecting us...I've had it with all three of my children.
I use past tense only because of my first born, Christopher. (9/12/87-5/27/88)
She and I went back to watching the movie. Paused a few times to make sure she still wanted to keep going, which she did. I asked her afterwards if she wanted to talk about it, the movie. "yes". Do you want to do it now? "no" I understood that. I really didn't want to talk about the rest of it then, either. I think there are some things to internalize.
I did tell her that it is still just as rare, and still just as understood a syndrome as it was 11 years ago. But that we learn every day something new, her and I. And she is so amazing and inspiring to me - her determination to heal and recover, not just linger. And to that she smiled, and nodded her head "yes". Exactly the point...
A new chatter around the hospital
Sara's doctors and nurses know that she really wants to go home and with Vallejo falling through you've read some of the options and ideas that have come rolling through in the last week. Well, there continues to be no room in the Santa Rosa ICU, as it is a very small unit. I also understand that there is a concern about her being a "chronic" bed, but that's ok. We know this already.
So, two days ago I get a call from the new discharge planner on the case and she asked if I wanted to go ahead and have her discharged from Walnut Creek to home. Um, hell yes! She said that her doctors have decided that would be ok after getting some more information about the Medi-CAL program. (it is called the EPSDT waiver program. allows us to have private duty nursing in the house 24hrs so that Sara can be with her family. She's still considered a pediatric (child) under Medi-CAL (under 21)).
Discharge planner said she'd call me on Friday and we'd talk more. Well, she did and we were going over an actual equipment list. What we're going to need at home to take care of her. Hospital bed, patient lift, oxygen, suction machine, feeding pump, traech supplies, etc. They are going to get the stuff ordered and start delivering so we can prepare her room and care areas. My head spins to think of it.
Then Social Worker called. She's worked the Medi-CAL program before. She offered to help marshall the Kaiser people and Medi-CAL people into writing the correct orders, paperwork, arrangements, etc. I gratefully accepted her help and she's happy to help Sara go home.
When I got to the hospital last night that was the chatter between the nurses and RTs on the floor - Sara preparing to go home. They had questions for me -all of them want to make sure she's going to be ok when turned over to my care. They asked about the Medi-CAL program, our plans for rehab at home, how will we handle emergencies, etc. It was nice to be talking about it finally as a nearing event. Sara couldn't stop smiling and rolling her head side to side as she looked at the face of whoever was talking.
Nobody can be more excited than her for this...
So, two days ago I get a call from the new discharge planner on the case and she asked if I wanted to go ahead and have her discharged from Walnut Creek to home. Um, hell yes! She said that her doctors have decided that would be ok after getting some more information about the Medi-CAL program. (it is called the EPSDT waiver program. allows us to have private duty nursing in the house 24hrs so that Sara can be with her family. She's still considered a pediatric (child) under Medi-CAL (under 21)).
Discharge planner said she'd call me on Friday and we'd talk more. Well, she did and we were going over an actual equipment list. What we're going to need at home to take care of her. Hospital bed, patient lift, oxygen, suction machine, feeding pump, traech supplies, etc. They are going to get the stuff ordered and start delivering so we can prepare her room and care areas. My head spins to think of it.
Then Social Worker called. She's worked the Medi-CAL program before. She offered to help marshall the Kaiser people and Medi-CAL people into writing the correct orders, paperwork, arrangements, etc. I gratefully accepted her help and she's happy to help Sara go home.
When I got to the hospital last night that was the chatter between the nurses and RTs on the floor - Sara preparing to go home. They had questions for me -all of them want to make sure she's going to be ok when turned over to my care. They asked about the Medi-CAL program, our plans for rehab at home, how will we handle emergencies, etc. It was nice to be talking about it finally as a nearing event. Sara couldn't stop smiling and rolling her head side to side as she looked at the face of whoever was talking.
Nobody can be more excited than her for this...
Wednesday, June 25, 2008
Slow going
Sara is doing fine. Back to stable. They continue the agressive breathing treatments because it is really good for her.
We continue to wait for a bed in Kaiser Santa Rosa. It is a very small ICU, so they don't come up very fast I understand. When talking to the discharge planner today she started talking sub-acute, which I squashed immediately. Then she mentioned vallejo rehab, and I had to update her that they wouldn't take her unless she could go to the floor and be stable - which was not going to happen because it is below an appropriate level of care for her condition. So, we wait for Santa Rosa.
In the interim, I will be restarting the paperwork for the MediCAL waiver program to get private duty nursing into our home to take care of her, one on one. I'll actually call MediCAL myself this time and get the "straight from the horses mouth" requirements and documentation references, so I can educate her doctors as well. The social worker for ICU-B does have experience with the EPSDT waiver program and is happy to help us with the paperwork.
So, Sara is stable and reasonably happy right now. She's looking forward to change. She and I were working on her computer the other day, downloading MP3 and figuring out how to play them on her system. She likes being able to control her own entertainment. Its that independent minded 19 year old coming out. We went over the designs for the front of some custom made, attitude laden hospital gowns. She and I are designing the sayings and i'm going to sew up some gowns in different colors (not the washed out baby blue or light hospital green) and then put these on the front. She really liked this one "have somebody slap you for me" and "place cat here" inside the outline of a cat on the chest.
Her brother is doing ok. Going to summer school, playing his bass, loving his dog, hanging out with friends, riding his bike everywhere. Normal summer kid stuff for a 17 year old.
I'm doing ok. Went to the doctor yesterday. I've got a couple of things going on and figured they'd pass, but didn't. So I actually went to the doctor for myself. Felt weird, actually. But I have a few things I have to do for myself in the midst of everything else. And, of course, another mammogram. I had the three tumors three years ago (and had dual partial mastectomies afterwards). Supposed to have annual mammograms after that, but lost my health insurance when my a**hole ex-partner fired me and stole my part of the company. (Karma will take care of him... ) Anyway - I'm finally able to get another mammogram, which is good. I'm not worried about it. And, of course, I have to lose weight.
Hmmm...how to do it all.....?
We continue to wait for a bed in Kaiser Santa Rosa. It is a very small ICU, so they don't come up very fast I understand. When talking to the discharge planner today she started talking sub-acute, which I squashed immediately. Then she mentioned vallejo rehab, and I had to update her that they wouldn't take her unless she could go to the floor and be stable - which was not going to happen because it is below an appropriate level of care for her condition. So, we wait for Santa Rosa.
In the interim, I will be restarting the paperwork for the MediCAL waiver program to get private duty nursing into our home to take care of her, one on one. I'll actually call MediCAL myself this time and get the "straight from the horses mouth" requirements and documentation references, so I can educate her doctors as well. The social worker for ICU-B does have experience with the EPSDT waiver program and is happy to help us with the paperwork.
So, Sara is stable and reasonably happy right now. She's looking forward to change. She and I were working on her computer the other day, downloading MP3 and figuring out how to play them on her system. She likes being able to control her own entertainment. Its that independent minded 19 year old coming out. We went over the designs for the front of some custom made, attitude laden hospital gowns. She and I are designing the sayings and i'm going to sew up some gowns in different colors (not the washed out baby blue or light hospital green) and then put these on the front. She really liked this one "have somebody slap you for me" and "place cat here" inside the outline of a cat on the chest.
Her brother is doing ok. Going to summer school, playing his bass, loving his dog, hanging out with friends, riding his bike everywhere. Normal summer kid stuff for a 17 year old.
I'm doing ok. Went to the doctor yesterday. I've got a couple of things going on and figured they'd pass, but didn't. So I actually went to the doctor for myself. Felt weird, actually. But I have a few things I have to do for myself in the midst of everything else. And, of course, another mammogram. I had the three tumors three years ago (and had dual partial mastectomies afterwards). Supposed to have annual mammograms after that, but lost my health insurance when my a**hole ex-partner fired me and stole my part of the company. (Karma will take care of him... ) Anyway - I'm finally able to get another mammogram, which is good. I'm not worried about it. And, of course, I have to lose weight.
Hmmm...how to do it all.....?
Saturday, June 21, 2008
Doing better
Sara is doing better after a few more days of chest physiotherapy and treatments. They still wipe her out and she sleeps afterwards, which is just what she needs right now.
Her dad, Mike, had the day off yesterday and spent the better part of the day with the girl. He reports that she was laughs and smiles, but got tired near the end of their visit and got droopy eyed. The RTs came in shortly before he left, so he figured she'd be completely out of it afterwards and went ahead and left.
She was in good spirits and encouraged by knowing she is moving to Santa Rosa. She is a little disappointed at not coming home home, but agrees that this is probably a better, safer interim step for us all.
Smart girl.
Today is saturday and nobody is up to see her today. I normally fill when someone can't go on a weekend, but decided that rest was best. So, I have been working on the bathroom, her room and my room, while she rests and gets stronger. I ran errands and went and got dog food. I stopped in to see her boss, Dr. Kundra at PetSmart/Banfields. He saw her a few weeks ago and was very encouraged about her progress. I told him about her moving when a bed becomes available and he was very happy. He wants to visit her more. He calls her is "favorite girl" and always says that when she's able to do anything he wants her to come back to work for him. He and his family love her as we all do. She has that affect on people...
Her dad, Mike, had the day off yesterday and spent the better part of the day with the girl. He reports that she was laughs and smiles, but got tired near the end of their visit and got droopy eyed. The RTs came in shortly before he left, so he figured she'd be completely out of it afterwards and went ahead and left.
She was in good spirits and encouraged by knowing she is moving to Santa Rosa. She is a little disappointed at not coming home home, but agrees that this is probably a better, safer interim step for us all.
Smart girl.
Today is saturday and nobody is up to see her today. I normally fill when someone can't go on a weekend, but decided that rest was best. So, I have been working on the bathroom, her room and my room, while she rests and gets stronger. I ran errands and went and got dog food. I stopped in to see her boss, Dr. Kundra at PetSmart/Banfields. He saw her a few weeks ago and was very encouraged about her progress. I told him about her moving when a bed becomes available and he was very happy. He wants to visit her more. He calls her is "favorite girl" and always says that when she's able to do anything he wants her to come back to work for him. He and his family love her as we all do. She has that affect on people...
Thursday, June 19, 2008
Update from Dr. Hospitalist1
He just called me and said that Sara is doing "much better". He reviewed her x-ray and they were able to clear a big plug out of the main airway of her left lung. Her lung sounds on that side immediately increase and she is breathing much easier. He also said that I was right, the level of care has to stay at 1:1 or 1:2, she just needs that much.
He said that if I can get the paperwork and stuff to show that she will get that level at home, then he will do everything in his power to get her home.
Until then, he said I could request a family transfer for her from 925 service area to 707 service area. So, I have done so. He said there was no difference in asking for Kaiser Vallejo Medical Center (not the rehab center, but they are in the same building) and asking for Kaiser Santa Rosa Medical Center. So, I officially requested transfer to Santa Rosa. Her primary care is in Santa Rosa, and she would be within 15 minutes of home and all her friends (that aren't away at school)
And then I JUST got off the phone with the discharge planner from ICU. Dr. Hospitalist 1 asked Dr. Intensivist (her MD today following her lungs) if she was stable enough for transport and he said Yes. So Dr. Hospitalist1 called Kaiser Santa Rosa and they have accepted her. We are waiting for an ICU bed assignment there and they will call me when it becomes available.
Wow...what a roller coaster ride...
He said that if I can get the paperwork and stuff to show that she will get that level at home, then he will do everything in his power to get her home.
Until then, he said I could request a family transfer for her from 925 service area to 707 service area. So, I have done so. He said there was no difference in asking for Kaiser Vallejo Medical Center (not the rehab center, but they are in the same building) and asking for Kaiser Santa Rosa Medical Center. So, I officially requested transfer to Santa Rosa. Her primary care is in Santa Rosa, and she would be within 15 minutes of home and all her friends (that aren't away at school)
And then I JUST got off the phone with the discharge planner from ICU. Dr. Hospitalist 1 asked Dr. Intensivist (her MD today following her lungs) if she was stable enough for transport and he said Yes. So Dr. Hospitalist1 called Kaiser Santa Rosa and they have accepted her. We are waiting for an ICU bed assignment there and they will call me when it becomes available.
Wow...what a roller coaster ride...
Chest X Ray better
Just talked to her nurse and her chest X-ray this morning is better than yesterday. They've been able to determine that her lung was not collapsed, just getting junky quick. The approach they are using seems to be working great.
She's still really tired after the respiratory therapy and breathing treatment and goes immediatley to sleep, but her nurse said she wakes up on her own, alert and smiling, looking around and laughing.
So, it is obvious she feels a LOT better.
She also said that Sara has not had a fever this morning.
She's still really tired after the respiratory therapy and breathing treatment and goes immediatley to sleep, but her nurse said she wakes up on her own, alert and smiling, looking around and laughing.
So, it is obvious she feels a LOT better.
She also said that Sara has not had a fever this morning.
A very sick girl
Well, as Michaels post said, Sara is back in ICU.
As I've posted she's been requiring increasing suction over the last few days. I've been jumping up and down to get her back out of 3N and they wouldn't do it because she wasn't sick. Well, now she is.
Yesterday morning she spiked a high fever and started sweating profusely. She was working hard to breathe and was constantly coughing stuff up out of her lungs. By early afternoon they were having to stay pretty close to her (Duh! she's a freaking quadriplegic who can't push a call button for help and you leave her alone??) Anyway, they did a chest x-ray and it was not good. Looks like her left lung is either collapsed or pretty full. The immediately got aggressive on the respiratory therapy, using a type of ventilator that beats pressure into her lungs to help expand and break up any junk in there. They started the treatment as I left work for the hospital.
By the time I got there she was done and then unresponsive to me. She wouldn't wake up without significant stimulation. The doctor had also just decided to transfer her to ICU. They were surprised to see me walk onto the ward literally minutes after the decision.
I finally got her awake enough to tell her I was there and that she was going back to ICU and would be ok. I gathered all the stuff from her room and she drifted off as they wheeled her out of the room.
We got her down there and settled in. She was dirty, sweaty, smelly and the receiving ICU nurse was compelled to give her a head to toe bath, change all linens and bedding. Sara really appreciated it and looked more comfortable. She still kept having trouble keeping her eyes open so I asked her if she was just that tired, and she said yes. I stayed for a long time, stroking her arm and holding her hand. I told her that Mom was going to sit right there and watch over her, she needed to sleep. I rubbed peppermint lotion into her feet and hands (Burts Bees - awesome stuff - and the scent is very relaxing to her).
I talked to the ICU supervisor for a long time about how she got back to ICU. Multiple ICU nurses were upset at her having to come back and being sick again and the condition she arrived in. I won't go into the details of all of it, but she can't be at that level of care. I told them if they tried to make me put her in a level of care below what is safe and appropriate for HER condition, then they'd get two rude words out of me and a speed-dial to my lawyer.
So, now the focus is on her getting better again. It is a devistating blow to us and her in particular. But, we like to end each day with some positive though, regardless of the appearence of the circumstance. So, yesterday she and I came up with we are glad she's back in ICU because she feels safer there than where she was. She didn't want me to put back up her roadmap to home, as it has changed once again. So I will work on the new roadmap so we can see our goal and the steps to there, when it is time. But the order of the day is getting this pneumonia cleared up as quickly as possible.
As I've posted she's been requiring increasing suction over the last few days. I've been jumping up and down to get her back out of 3N and they wouldn't do it because she wasn't sick. Well, now she is.
Yesterday morning she spiked a high fever and started sweating profusely. She was working hard to breathe and was constantly coughing stuff up out of her lungs. By early afternoon they were having to stay pretty close to her (Duh! she's a freaking quadriplegic who can't push a call button for help and you leave her alone??) Anyway, they did a chest x-ray and it was not good. Looks like her left lung is either collapsed or pretty full. The immediately got aggressive on the respiratory therapy, using a type of ventilator that beats pressure into her lungs to help expand and break up any junk in there. They started the treatment as I left work for the hospital.
By the time I got there she was done and then unresponsive to me. She wouldn't wake up without significant stimulation. The doctor had also just decided to transfer her to ICU. They were surprised to see me walk onto the ward literally minutes after the decision.
I finally got her awake enough to tell her I was there and that she was going back to ICU and would be ok. I gathered all the stuff from her room and she drifted off as they wheeled her out of the room.
We got her down there and settled in. She was dirty, sweaty, smelly and the receiving ICU nurse was compelled to give her a head to toe bath, change all linens and bedding. Sara really appreciated it and looked more comfortable. She still kept having trouble keeping her eyes open so I asked her if she was just that tired, and she said yes. I stayed for a long time, stroking her arm and holding her hand. I told her that Mom was going to sit right there and watch over her, she needed to sleep. I rubbed peppermint lotion into her feet and hands (Burts Bees - awesome stuff - and the scent is very relaxing to her).
I talked to the ICU supervisor for a long time about how she got back to ICU. Multiple ICU nurses were upset at her having to come back and being sick again and the condition she arrived in. I won't go into the details of all of it, but she can't be at that level of care. I told them if they tried to make me put her in a level of care below what is safe and appropriate for HER condition, then they'd get two rude words out of me and a speed-dial to my lawyer.
So, now the focus is on her getting better again. It is a devistating blow to us and her in particular. But, we like to end each day with some positive though, regardless of the appearence of the circumstance. So, yesterday she and I came up with we are glad she's back in ICU because she feels safer there than where she was. She didn't want me to put back up her roadmap to home, as it has changed once again. So I will work on the new roadmap so we can see our goal and the steps to there, when it is time. But the order of the day is getting this pneumonia cleared up as quickly as possible.
Wednesday, June 18, 2008
Back In The ICU
I don't know exactly what the deal is (I am generally uninformed when it comes to sara -- I love her and all but I still have my own life to tend to unfortunately), mainly because the following is literally all I've heard in the past 24 hours or so:
"Sister back in ICU".
I got it in a text message at about 7pm today.
I figured I'd update you all, but that's literally all I know. Don't bother asking me for answers, I don't have them either as of yet.
"Sister back in ICU".
I got it in a text message at about 7pm today.
I figured I'd update you all, but that's literally all I know. Don't bother asking me for answers, I don't have them either as of yet.
Been cleared for landing at home...
After discussing with her doctor last night the final is that Sara will discharge directly from Walnut Creek. We have to get some things in order before they will let her go, but that's where she'll leave from. The doctor, Sara and I discussed it last night and everyone is good with it.
She is requiring more suction than Vallejo is comfortable with to accept her, but not enough to send her back to ICU, so she has to stay on 3N until she leaves. We'll just have to stay on top of her care to ensure she gets enough in that interim.
So, there is the latest. I started off this morning calling the nursing service to give them the doctors number so they can put together the plan of care and orders. Next call is the discharge planner to get a list of what they are ordering and what I need to get on my own.
Now that its here there is so much to do!!
She is requiring more suction than Vallejo is comfortable with to accept her, but not enough to send her back to ICU, so she has to stay on 3N until she leaves. We'll just have to stay on top of her care to ensure she gets enough in that interim.
So, there is the latest. I started off this morning calling the nursing service to give them the doctors number so they can put together the plan of care and orders. Next call is the discharge planner to get a list of what they are ordering and what I need to get on my own.
Now that its here there is so much to do!!
Tuesday, June 17, 2008
Ups and Downs and not moving yet and to who knows where...
I called the discharge planners this morning - looking forward to hearing what time she was moving - and got something completely different.
There are problems...with Sara...she says. RTs saying that they are concerned about her condition changing and she's starting to require more and more suctioning. (A new pneumonia perhaps - from aspiration. She's been left alone a lot and she aspirated fluid from her traech bag..again...) She says that the nurses were complaining about how much she needed, etc...Vallejo probably won't accept her now...condition...
I felt it welling up inside me as I listened to her - fear, anger, resolve. And I started to respond, quietly at first, trying to calm myself and hold back, but then the salty taste started in my mouth and the tears started.
No, ma'am. This is not ok. This is exactly why the doctors who have been regular with her wanted to keep her in ICU. The level of care at 3N is below what she needs and below what you would allow me to provide her at home. Every time she's gone to 3N she's ended up aspirating and ending up sick and back in ICU. I was assured she wouldn't have to go "back up on the floor" by Dr. Hospitalist 1 and Dr. Hospitalist 2, as they also felt she needed the higher level of care to maintain her health. But, no, Kaiser Vallejo wanted her to go to the floor, even though she was stable, no fever, little suctioning, and ready to move...they wanted her to go to the floor "just to see". Well, now we all see. See that she doesn't get enough attention and little precautions - There are 30 people in and out of her room, another family and everything they walk in with, and now my daughter is getting sick.
I told her that this is not ok. If Vallejo won't accept her unless she's been on the floor, then screw Vallejo. Send her back to ICU and let her get the level of care and attention she needs and closer to the level we will provide. Let her get healthy again and train us from there and then she goes home. But don't put her anywhere to "looksie" and let her get sick. Pneumonia WILL kill her. Eventually she will get a case of it we can't fix and it will kill her. It is only a matter of time. And each time she gets it she is one step closer, and I cannot have that happening over and over for burocracy sake.
She understood, having been our discharge planner for most of Sara's stay in Walnut Creek. She agreed with my assessment and feeling, but felt like her hands were tied by Vallejo. So, I asked to talk to them. She obliged and gave me their number and the people who have been handling her intake there.
So, I called Vallejo and spoke with Intake Coordinator 1. I introduced myself and she immediately knew I was Sara's mom. So I told her what was going on, level of care, suctioning, stable, what happens when she goes from 1:2 nursing to 1:6 and how that is lower than the level of care they will allow me to provide her once home. Ridiculous that they require her to go to 3N in order to go there. Its just family training. They don't want her for rehab and we know that, so just let us get her there, trained, equipment and be on our way. She assured me that it wasn't that they didn't want her - on the contrary. They want to meet her, help if they can, and have been keeping up with her progress for quite a while.
She explained that Intake Coordinator 2 has been very much involved with getting her there. She apparently keeps the team up on her status daily and has for weeks. They just want to be sure what they are getting into and able to provide for her adequately with their nursing levels. Dr. Rehab and Dr. Hospitalist have been talking often about her case and trying to work within the system... Encouraged me to talk to Dr. Hospitalist, as he and Dr. Rehab might have the ability to get on the same page regarding her.
I had to leave my office and go to the conference room, where I completely fell apart. It doesn't happen often, but I can't handle everything everyday all the time and keep my composure. I just swallow it and hold it down because I have nowhere else to put it. My relationship seems to be in the toilet and he's never around or talking to me - has left me to handle this all on my own under the guise of "staying out of the way". I'm not one to have girlfriends or many close friends in the first place. Probably from growing up military. I'd rather put my energies towards my primary relationship and my kids. So when I fall apart, and he's not there to catch me, I fall alone and hard. And I did. I stood there, holding myself, holding back my muffled crying, fear, frustration, sadness and anger choked behind my hand and closed eyes. And I held on until it passed, like a freight train.
Then I called Dr. Hospitalist. We have had three discharge planning conferences together so far. So, he knows that our goal is to bring her home. He's a very conservative, cautious doctor and said that he's not sure when she'll come home now.
I lost it.
No fucking way. No, sir. She is coming home. She is coming home before the end of the month whether she goes to Vallejo or not. She's coming home because she doesn't deserve to have her life put at risk over and over because of policy and bureacracy. She's coming home because she doesn't deserve this. She didn't need to have this stroke. They could have caught it in time if they had done the right tests for certain trauma injuries like hers. (I am referring to the first hospital - not UCDavis or any of the Kaisers). She isn't some dumb kid who was out drinking and driving and flipped her car and this is Karma for shit done. She was supposed to wake up the next morning, but they didn't do all the tests, and they missed it on the ones they did. So, No Sir. She's not going to stay in the hospital. Medicine can't help her anymore and all we are doing is shuffling her from one room to the next. She deserves a life, and is asking for hers back. So, No. She is coming home by the end of the month with or without the blessing of Kaiser, with or without Vallejo taking her, that's it. She deserves better than this now and has asked me for it and I said yes. So, yes it is. Do whatever you have to on your end to make that happen and be in control of the process or find someone who is able to - I don't care who.
He listened and understood, agreed where he could. He understands that she needs to go home, for many more reasons than she needs to stay for. He explained that sometimes his hands are tied, but he was going to see what else he could do. And I told him that I was going to hold him responsible to do so. Not whoever happens to be the doctor on shift that day, but him. I let him go to handle that, and I gathered myself and called my daughter.
I talked to Sara and she is requiring more suction. It was water going down her tube when they moved her. She doesn't feel like she's getting sick yet, but that she does need the extra suction. I told her about what is going on between Walnut Creek and Vallejo, and about my conversations with each of the players. I asked her if she and I were still on the same page and she said yes. I asked her if Mom was doing right by her and her wishes and she said Yes. So I told her OK, I'll keep going. You keep breathing deep, call the nurses for suction when you need it, keep those glasses on so you can communicate and call for help, and we will get the rest of the way. Then she said "Mom", which she knows I get such a warm kick out of. Its become her easy way of saying that she loves me. Then she said it again and I smiled. I could almost feel her hug me and I told her that I loved her too and would see her in a few hours.
There are problems...with Sara...she says. RTs saying that they are concerned about her condition changing and she's starting to require more and more suctioning. (A new pneumonia perhaps - from aspiration. She's been left alone a lot and she aspirated fluid from her traech bag..again...) She says that the nurses were complaining about how much she needed, etc...Vallejo probably won't accept her now...condition...
I felt it welling up inside me as I listened to her - fear, anger, resolve. And I started to respond, quietly at first, trying to calm myself and hold back, but then the salty taste started in my mouth and the tears started.
No, ma'am. This is not ok. This is exactly why the doctors who have been regular with her wanted to keep her in ICU. The level of care at 3N is below what she needs and below what you would allow me to provide her at home. Every time she's gone to 3N she's ended up aspirating and ending up sick and back in ICU. I was assured she wouldn't have to go "back up on the floor" by Dr. Hospitalist 1 and Dr. Hospitalist 2, as they also felt she needed the higher level of care to maintain her health. But, no, Kaiser Vallejo wanted her to go to the floor, even though she was stable, no fever, little suctioning, and ready to move...they wanted her to go to the floor "just to see". Well, now we all see. See that she doesn't get enough attention and little precautions - There are 30 people in and out of her room, another family and everything they walk in with, and now my daughter is getting sick.
I told her that this is not ok. If Vallejo won't accept her unless she's been on the floor, then screw Vallejo. Send her back to ICU and let her get the level of care and attention she needs and closer to the level we will provide. Let her get healthy again and train us from there and then she goes home. But don't put her anywhere to "looksie" and let her get sick. Pneumonia WILL kill her. Eventually she will get a case of it we can't fix and it will kill her. It is only a matter of time. And each time she gets it she is one step closer, and I cannot have that happening over and over for burocracy sake.
She understood, having been our discharge planner for most of Sara's stay in Walnut Creek. She agreed with my assessment and feeling, but felt like her hands were tied by Vallejo. So, I asked to talk to them. She obliged and gave me their number and the people who have been handling her intake there.
So, I called Vallejo and spoke with Intake Coordinator 1. I introduced myself and she immediately knew I was Sara's mom. So I told her what was going on, level of care, suctioning, stable, what happens when she goes from 1:2 nursing to 1:6 and how that is lower than the level of care they will allow me to provide her once home. Ridiculous that they require her to go to 3N in order to go there. Its just family training. They don't want her for rehab and we know that, so just let us get her there, trained, equipment and be on our way. She assured me that it wasn't that they didn't want her - on the contrary. They want to meet her, help if they can, and have been keeping up with her progress for quite a while.
She explained that Intake Coordinator 2 has been very much involved with getting her there. She apparently keeps the team up on her status daily and has for weeks. They just want to be sure what they are getting into and able to provide for her adequately with their nursing levels. Dr. Rehab and Dr. Hospitalist have been talking often about her case and trying to work within the system... Encouraged me to talk to Dr. Hospitalist, as he and Dr. Rehab might have the ability to get on the same page regarding her.
I had to leave my office and go to the conference room, where I completely fell apart. It doesn't happen often, but I can't handle everything everyday all the time and keep my composure. I just swallow it and hold it down because I have nowhere else to put it. My relationship seems to be in the toilet and he's never around or talking to me - has left me to handle this all on my own under the guise of "staying out of the way". I'm not one to have girlfriends or many close friends in the first place. Probably from growing up military. I'd rather put my energies towards my primary relationship and my kids. So when I fall apart, and he's not there to catch me, I fall alone and hard. And I did. I stood there, holding myself, holding back my muffled crying, fear, frustration, sadness and anger choked behind my hand and closed eyes. And I held on until it passed, like a freight train.
Then I called Dr. Hospitalist. We have had three discharge planning conferences together so far. So, he knows that our goal is to bring her home. He's a very conservative, cautious doctor and said that he's not sure when she'll come home now.
I lost it.
No fucking way. No, sir. She is coming home. She is coming home before the end of the month whether she goes to Vallejo or not. She's coming home because she doesn't deserve to have her life put at risk over and over because of policy and bureacracy. She's coming home because she doesn't deserve this. She didn't need to have this stroke. They could have caught it in time if they had done the right tests for certain trauma injuries like hers. (I am referring to the first hospital - not UCDavis or any of the Kaisers). She isn't some dumb kid who was out drinking and driving and flipped her car and this is Karma for shit done. She was supposed to wake up the next morning, but they didn't do all the tests, and they missed it on the ones they did. So, No Sir. She's not going to stay in the hospital. Medicine can't help her anymore and all we are doing is shuffling her from one room to the next. She deserves a life, and is asking for hers back. So, No. She is coming home by the end of the month with or without the blessing of Kaiser, with or without Vallejo taking her, that's it. She deserves better than this now and has asked me for it and I said yes. So, yes it is. Do whatever you have to on your end to make that happen and be in control of the process or find someone who is able to - I don't care who.
He listened and understood, agreed where he could. He understands that she needs to go home, for many more reasons than she needs to stay for. He explained that sometimes his hands are tied, but he was going to see what else he could do. And I told him that I was going to hold him responsible to do so. Not whoever happens to be the doctor on shift that day, but him. I let him go to handle that, and I gathered myself and called my daughter.
I talked to Sara and she is requiring more suction. It was water going down her tube when they moved her. She doesn't feel like she's getting sick yet, but that she does need the extra suction. I told her about what is going on between Walnut Creek and Vallejo, and about my conversations with each of the players. I asked her if she and I were still on the same page and she said yes. I asked her if Mom was doing right by her and her wishes and she said Yes. So I told her OK, I'll keep going. You keep breathing deep, call the nurses for suction when you need it, keep those glasses on so you can communicate and call for help, and we will get the rest of the way. Then she said "Mom", which she knows I get such a warm kick out of. Its become her easy way of saying that she loves me. Then she said it again and I smiled. I could almost feel her hug me and I told her that I loved her too and would see her in a few hours.
Monday, June 16, 2008
Moving tomorrow to Vallejo
I spent a good part of the day chasing people down on the phone. She was supposed to move today, but if you remember last time moving is quite the event. It doesn't help that every day you have a different group of nurses, RTs, discharge planners, doctors, etc. It seems like Sara and I are the only two players who don't change and we both get to educate people daily.
Anyway, the paperwork didn't get to Vallejo early enough today to make the move and I have assurance from the discharge planner that she will send Sara's notes over right after rounds (they have to have the daily status before making the decision - and do so early enough in the day to transport her during the day shift.)
She is in very good spirits. Getting to see Sabrina, Daniel and, of course, her Daniel gave her a real boost. She also got to see Nancy, her boyfriend's mother (whom she loves). And Dad was there, as always, on Saturday to hang out and watch movies with her.
This move to Vallejo is a real big one. It is the final leg on her long journey from the accident site back to home. You get so caught up in the day to day of going back and forth that you start to forget just how long its been since she was home, and just how important it is to her to get back there.
I can look at a calendar and know it will be 8 months by the time she gets here. That's 8 months in our time, time we can relate to "out here" where things change constantly but where a minute feels like a minute. Then there is "hospital time" where a minute is an eternity and an eternity is a minute. When she's lying there with an itch,waiting for someone to come in it can be only a minute and feel like an eternity. When she was in that first surgery to remove the clot time stood absolutely still...
The time she's spent in the hospital is the first leg on her journey. Even so, there have been some chapters along the way - milestones marked to help her see how far she's come. I look forward to showing her the pictures and the timeline I'm putting together. I want to show her how remarkable she has been and get her ready for the next phase of her journey. This one has been all about healing slowly and stability and time. The next one continues that at home, with her family and friends and animals - but it adds a focus on the fight - the fight for a little more movement, another ability, more communication, another freedom.
She has so far to go and while i've always understood that, its starting to hit me of just what that truly means...here. Still, I'd rather have her here and us working together than any place else on earth.
Anyway, the paperwork didn't get to Vallejo early enough today to make the move and I have assurance from the discharge planner that she will send Sara's notes over right after rounds (they have to have the daily status before making the decision - and do so early enough in the day to transport her during the day shift.)
She is in very good spirits. Getting to see Sabrina, Daniel and, of course, her Daniel gave her a real boost. She also got to see Nancy, her boyfriend's mother (whom she loves). And Dad was there, as always, on Saturday to hang out and watch movies with her.
This move to Vallejo is a real big one. It is the final leg on her long journey from the accident site back to home. You get so caught up in the day to day of going back and forth that you start to forget just how long its been since she was home, and just how important it is to her to get back there.
I can look at a calendar and know it will be 8 months by the time she gets here. That's 8 months in our time, time we can relate to "out here" where things change constantly but where a minute feels like a minute. Then there is "hospital time" where a minute is an eternity and an eternity is a minute. When she's lying there with an itch,waiting for someone to come in it can be only a minute and feel like an eternity. When she was in that first surgery to remove the clot time stood absolutely still...
The time she's spent in the hospital is the first leg on her journey. Even so, there have been some chapters along the way - milestones marked to help her see how far she's come. I look forward to showing her the pictures and the timeline I'm putting together. I want to show her how remarkable she has been and get her ready for the next phase of her journey. This one has been all about healing slowly and stability and time. The next one continues that at home, with her family and friends and animals - but it adds a focus on the fight - the fight for a little more movement, another ability, more communication, another freedom.
She has so far to go and while i've always understood that, its starting to hit me of just what that truly means...here. Still, I'd rather have her here and us working together than any place else on earth.
Thursday, June 12, 2008
What a good day...
Yes, she is coming home - after 8 months in the hospital. I am in daily contact with the discharge planners trying to get her to Kaiser Vallejo (for family caregiver training) and they have said they won't take her this week, but will probably on Monday.
She will be in Kaiser Vallejo for up to two weeks.
I have told Kaiser that I want her home before the end of the month, regardless of when Kaiser Vallejo accepts or doesn't accept her. We'll take the training at Kaiser Walnut Creek if we have to. She's ready. Doctors all say she'd be better off at home, and safer (from all the nasty junk floating around in a hospital - yikes). Now she just needs her family, and friends, and home, and time.
Yesterday she picked out the paint color for her room. I'm picking it up tomorrow and painting this weekend.
Today she and I designed some clothes for her. We figured out how to make some dresses that will be comfortable, accessible, easy to put on/take off and not interfere with her trach. We even figured out how to put sandals on her and keep them on, since she can't yet control her feet.
Today, just for fun it seemed, she decided to show off something new and when I arrived she rolled her head all the way to her right shoulder, then all the way over to her left shoulder and back again...laughing the whole time. That girl is unstoppable.
Then we called her Grandma Sande and they got to talk. It was Sara's first phone call with someone other than me. They both really enjoyed it and Sara was smiles the whole time. She was very proud of herself when it was done, having worked her computer as quickly and as accurately as she could, and communicated for herself. And I did hear her grandma get a little choked up at it and some of the things Sara said - and knowing they came straight from her precious granddaughter.
Sara gets to see her beloved Daniel tomorrow and her friend Sylvie! Sara is so looking forward to it. She loves him soooo much and they are truly one together. She's happy that Sylvie is back from school and gets to come visit. She thrilled Sylvie the other day when she sent her an email and got this great response back.
(ooh...and we found a button on her screen that reads her emails out loud, so she doesn't have to read them [screen position, her bed angle, and font size makes it hard to read much yet]. it worked awesome - so she CAN get longer emails.) We still can't get the respond feature to work. I have to call Dynavox support and ferret it out with them.
She wants me to call and talk to her on the phone tomorrow even though she is getting to see her boyfriend and dear friend. (she'd rather have them over Mom...I know... :) I am fine with that! LOL) She loves it when I call her and yammer on...she gets to practice the computer without me there, watching and helping. She's proving to herself that she CAN do it
...its is so nice to see her so bright and encouraged...looking forward... that right there is the Essence of Sara.
She will be in Kaiser Vallejo for up to two weeks.
I have told Kaiser that I want her home before the end of the month, regardless of when Kaiser Vallejo accepts or doesn't accept her. We'll take the training at Kaiser Walnut Creek if we have to. She's ready. Doctors all say she'd be better off at home, and safer (from all the nasty junk floating around in a hospital - yikes). Now she just needs her family, and friends, and home, and time.
Yesterday she picked out the paint color for her room. I'm picking it up tomorrow and painting this weekend.
Today she and I designed some clothes for her. We figured out how to make some dresses that will be comfortable, accessible, easy to put on/take off and not interfere with her trach. We even figured out how to put sandals on her and keep them on, since she can't yet control her feet.
Today, just for fun it seemed, she decided to show off something new and when I arrived she rolled her head all the way to her right shoulder, then all the way over to her left shoulder and back again...laughing the whole time. That girl is unstoppable.
Then we called her Grandma Sande and they got to talk. It was Sara's first phone call with someone other than me. They both really enjoyed it and Sara was smiles the whole time. She was very proud of herself when it was done, having worked her computer as quickly and as accurately as she could, and communicated for herself. And I did hear her grandma get a little choked up at it and some of the things Sara said - and knowing they came straight from her precious granddaughter.
Sara gets to see her beloved Daniel tomorrow and her friend Sylvie! Sara is so looking forward to it. She loves him soooo much and they are truly one together. She's happy that Sylvie is back from school and gets to come visit. She thrilled Sylvie the other day when she sent her an email and got this great response back.
(ooh...and we found a button on her screen that reads her emails out loud, so she doesn't have to read them [screen position, her bed angle, and font size makes it hard to read much yet]. it worked awesome - so she CAN get longer emails.) We still can't get the respond feature to work. I have to call Dynavox support and ferret it out with them.
She wants me to call and talk to her on the phone tomorrow even though she is getting to see her boyfriend and dear friend. (she'd rather have them over Mom...I know... :) I am fine with that! LOL) She loves it when I call her and yammer on...she gets to practice the computer without me there, watching and helping. She's proving to herself that she CAN do it
...its is so nice to see her so bright and encouraged...looking forward... that right there is the Essence of Sara.
Wednesday, June 11, 2008
Feels like my foot is nailed to the floor...
Just talked to the hospital...Vallejo won't accept her straight out of the ICU, SO, they have to transfer her back to 3N (lower level of care), so that Vallejo will accept her.
I talked to her nurse and asked that Dr. Hospitalist write orders that even though she is in 3N that she still gets the same frequency of respiratory care and treatments, so we don't end up with another issue that throws her down to 2N-ICU again.
I've got a call into the discharge planner to see if Vallejo had a bed when they made this determination this morning, or were they just saying they wouldn't accept her from the ICU when they did have a bed...
I'll keep y'all posted. (yes, I AM from Texas...)
I talked to her nurse and asked that Dr. Hospitalist write orders that even though she is in 3N that she still gets the same frequency of respiratory care and treatments, so we don't end up with another issue that throws her down to 2N-ICU again.
I've got a call into the discharge planner to see if Vallejo had a bed when they made this determination this morning, or were they just saying they wouldn't accept her from the ICU when they did have a bed...
I'll keep y'all posted. (yes, I AM from Texas...)
Tuesday, June 10, 2008
She's so funny...and her answers to questions...
We have been working on her communication lately. Its been our main focus, besides getting her home, since she starting feeling depressed a few weeks ago. (she's feeling much better now.)
This girl still has such a sense of humor. It is truly one of the things I think most people love about her. I remember asking her, only a few days after her accident, if she still had her sense of humor. (I had cracked some pretty rank jokes in her room...ones she would have howled laughing at...but at the time she was unable to move anything including her eyelids..) I was so thankful that she answered "Yes" (back then we had to hold her eyelids open to see her eyes move.)
She's played jokes on almost everyone the last few months. We've laughed over silly stuff. Well, she got me tonight. I howled laughing over the simplist funny. When she first got the communication computer she was all over the place and ended up in some section where all she could say was "fish". Well, that made us both laugh and became our "what in the heck".
Well, tonight, she and I were talking on the phone (me on phone, her on computer) and out of the blue she said "fish" and we both laughed. She absolutely delighted me. I know it loses a lot in translation, but it is her, shining through...
Also, in answer to questions posed from previous comments:
How are you feeling? - "reasonably content" "fine" "aside from being in the hospital"
Do you want anything? - "just to get out of here (hospital)"
we were ending the call and she said "love my mom"
made me cry...first time i've heard that in months... (i always tell her "love my girl" and she always responds "love my mom".)
This girl still has such a sense of humor. It is truly one of the things I think most people love about her. I remember asking her, only a few days after her accident, if she still had her sense of humor. (I had cracked some pretty rank jokes in her room...ones she would have howled laughing at...but at the time she was unable to move anything including her eyelids..) I was so thankful that she answered "Yes" (back then we had to hold her eyelids open to see her eyes move.)
She's played jokes on almost everyone the last few months. We've laughed over silly stuff. Well, she got me tonight. I howled laughing over the simplist funny. When she first got the communication computer she was all over the place and ended up in some section where all she could say was "fish". Well, that made us both laugh and became our "what in the heck".
Well, tonight, she and I were talking on the phone (me on phone, her on computer) and out of the blue she said "fish" and we both laughed. She absolutely delighted me. I know it loses a lot in translation, but it is her, shining through...
Also, in answer to questions posed from previous comments:
How are you feeling? - "reasonably content" "fine" "aside from being in the hospital"
Do you want anything? - "just to get out of here (hospital)"
we were ending the call and she said "love my mom"
made me cry...first time i've heard that in months... (i always tell her "love my girl" and she always responds "love my mom".)
Requested to go home
Sara and I have requested to Kaiser that she be released to home before the end of the month.
Medically she is stable and continuing to stay in the hospital now just exposes her to other sources of infection.
I spoke to the hospital at length yesterday and told them that if Kaiser Vallejo won't accept her in the next week for family training, that I wanted Kaiser Walnut Creek to start our training and discharge her from there. The discharge planner indicated that she thought Sara would move to Vallejo before the end of the week, as soon as a bed is available.
So, there it is. She's ready and we're getting ready. There are many people who have offered to help in any way they could since all this started. Now that there is actually stuff to do that people can help with I will be gratefully accepting a hand.
I'm going to be updating the main website - www.SarasCourage.org - with stuff we need help with and updating pictures and stuff.
Sara continues to work on communication. She's emailed a few more people and we've been working on making the navigation easier. If you have received an email from her it is fine that you respond, but please don't give out her email address to her device. We have to let her build up to being able to handle it. We are still working on how to respond to a received email, so just know that she got your response for now.
I've setup her regular computer, so you may see her "online" in the chat program. Its not her yet. I am getting some of her phrases and address list out. You're welcome to say Hi. I'll let you know it is her mother, but I will pass on all messages.
Medically she is stable and continuing to stay in the hospital now just exposes her to other sources of infection.
I spoke to the hospital at length yesterday and told them that if Kaiser Vallejo won't accept her in the next week for family training, that I wanted Kaiser Walnut Creek to start our training and discharge her from there. The discharge planner indicated that she thought Sara would move to Vallejo before the end of the week, as soon as a bed is available.
So, there it is. She's ready and we're getting ready. There are many people who have offered to help in any way they could since all this started. Now that there is actually stuff to do that people can help with I will be gratefully accepting a hand.
I'm going to be updating the main website - www.SarasCourage.org - with stuff we need help with and updating pictures and stuff.
Sara continues to work on communication. She's emailed a few more people and we've been working on making the navigation easier. If you have received an email from her it is fine that you respond, but please don't give out her email address to her device. We have to let her build up to being able to handle it. We are still working on how to respond to a received email, so just know that she got your response for now.
I've setup her regular computer, so you may see her "online" in the chat program. Its not her yet. I am getting some of her phrases and address list out. You're welcome to say Hi. I'll let you know it is her mother, but I will pass on all messages.
Monday, June 9, 2008
The sound of laughter
Yesterday I went to the hospital and took Victoria with me. While we were there the RTs were doing some therapy on Sara. Well, one of the RTs decided to do a breathing test on her and plug her traech. They pulled the cannula and screwed on a cap and Sara started nose and mouth breathing. It tickled her throat a little bit and she coughed. She was taking real good deep breaths when somebody said something funny - and she laughed out loud!
She is able to vibrate her vocal cords! It sounded so funny that she laughed again, and then again. It was a evil sort of sound, but she was able to provide enough stress to cause the cords to vibrate.
This is huge news. It means that she will not be mute. It also means that at some point she will be a good candidate for speech therapy. She has already started mouthing words, but needs a lot of help in that area, and time to continue to heal.
She is able to vibrate her vocal cords! It sounded so funny that she laughed again, and then again. It was a evil sort of sound, but she was able to provide enough stress to cause the cords to vibrate.
This is huge news. It means that she will not be mute. It also means that at some point she will be a good candidate for speech therapy. She has already started mouthing words, but needs a lot of help in that area, and time to continue to heal.
Tuesday, June 3, 2008
Sara has some messages...
I just spent two + hours on the phone with Sara. We have a system kind of jury rigged. I call the hospital and have her nurse put the phone up to her ear where she can hear me. Then they setup Sara's computer where she can use it and I listen for her responses. We have tried a couple of times, but haven't been able to get ourselves operational - until tonight.
She and I had a great time. I just talked and talked and she'd drop in a comment here and there. Then I'd ask her questions and wait patiently for her answer. And then she got brave and started spelling out strings of words and communicating other thoughts she had. I told you that this was a very slow process and takes a huge effort on her part.
(i was talking about this and that, home, her brother, cat, dogs, boyfriend, friends, tower of time, reading her stuff from the blog, and messages that have come to her...)
Here are some of her messages:
"scriffle the dogs for me" she could hear the dogs and cat playing in the background.
"i miss the animals"
"tell them I miss them"
I asked who she missed.
"tower of time"
"daniel and victoria and ren and joseph and tim"
I know there are a lot more people she misses and thinks of. So please don't be hurt that she doesn't communicate that right off. Give her time to get more comfortable and stretch her wings. Everybody is inside her and she remembers everything.
We had such a great time. It is slow, but she is communicating thoughts and wants, not just needs. And that makes her feel incredibly good.
She and I had a great time. I just talked and talked and she'd drop in a comment here and there. Then I'd ask her questions and wait patiently for her answer. And then she got brave and started spelling out strings of words and communicating other thoughts she had. I told you that this was a very slow process and takes a huge effort on her part.
(i was talking about this and that, home, her brother, cat, dogs, boyfriend, friends, tower of time, reading her stuff from the blog, and messages that have come to her...)
Here are some of her messages:
"scriffle the dogs for me" she could hear the dogs and cat playing in the background.
"i miss the animals"
"tell them I miss them"
I asked who she missed.
"tower of time"
"daniel and victoria and ren and joseph and tim"
I know there are a lot more people she misses and thinks of. So please don't be hurt that she doesn't communicate that right off. Give her time to get more comfortable and stretch her wings. Everybody is inside her and she remembers everything.
We had such a great time. It is slow, but she is communicating thoughts and wants, not just needs. And that makes her feel incredibly good.
Monday, June 2, 2008
Update on the world of Sara
Sara had a pretty hard week last week. She finally fought off that gnarly infection. A couple of weeks of hardcore antibiotics, deep lung suctioning, and coughing until she was purple finally got the junk out of the lungs. The antibiotics took care of other sources of infection, one of which was her PICC line into a vein near the heart.
What was hard on her was her spirit. Mike saw it earlier in the week...she wasn't smiling as much. I saw it...she seemed pretty flat..detached. I asked if they had her on any painkillers or other drugs other than the antibiotics. They didn't, and had noticed a change in her mood, as well.
It took three days to finally get it out of her. She is depressed. She is feeling physically fine now and starting to feel like her entire world is going to be inside of a hospital room. She also has the ability to communicate via the computer, but doesn't know what to say to anyone. She's been in silence for 7 months, expressing only needs, and she doesn't know how to start communicating again. She wants her friends and family to be there for her, communicate with her, be part of her life, but she doesn't know how to reach out and re-engage them. So she decided she wasn't going to. She decided that she was going to pull into herself and not try. And that brought her down, very down.
Once I was finally able to get to the heart of the matter she and I talked a long time about it. We shared some tears. I got some of her fears out in the open. We talked about ways to make it easier to reengage her world. We talked about plans for the near future and focused on bringing her home. I told her that I take her mental health as seriously as her physical health, and that it was time to make a change for both.
So, I whipped up the staff into a froth on Friday and got the doctor, discharge planner, nursing supervisor, and social worker all focusing on getting SAra out fo there. I don't care if she goes to KVRC or if we get trained at Walnut Creek, but she's coming home. I talked to Dr. Hospitalist at length on Saturday, and she totally concurred that it is time to transition her to home.
On Saturday, I transcribed a note for Sara to Kaiser to that effect. From Sara, basically saying she's ready to go. Help her family get her home. Thanks for saving her. Its time for her to go have a life.
We also talked about ways to make it easier to start talking to her friends again. She doesn't know what to say after all this time - where to start - are they even still there for her. She's afraid she's lost a few, because of how overwhelming this can be for anybody. She knows it may happen, but we have to get talking with them for her to find out. We came upon the fact that it would be easiest for her to answer questions first.
So, if anybody has questions for Sara, post them here and I'll ask her and post her responses. Or you can email me directly, or Daniel.
Then we'll get her emailing back and forth with her friends, questions, then whereever the interaction takes you guys. We won't post her communication device email out here in public, until she's fully ready.
What was hard on her was her spirit. Mike saw it earlier in the week...she wasn't smiling as much. I saw it...she seemed pretty flat..detached. I asked if they had her on any painkillers or other drugs other than the antibiotics. They didn't, and had noticed a change in her mood, as well.
It took three days to finally get it out of her. She is depressed. She is feeling physically fine now and starting to feel like her entire world is going to be inside of a hospital room. She also has the ability to communicate via the computer, but doesn't know what to say to anyone. She's been in silence for 7 months, expressing only needs, and she doesn't know how to start communicating again. She wants her friends and family to be there for her, communicate with her, be part of her life, but she doesn't know how to reach out and re-engage them. So she decided she wasn't going to. She decided that she was going to pull into herself and not try. And that brought her down, very down.
Once I was finally able to get to the heart of the matter she and I talked a long time about it. We shared some tears. I got some of her fears out in the open. We talked about ways to make it easier to reengage her world. We talked about plans for the near future and focused on bringing her home. I told her that I take her mental health as seriously as her physical health, and that it was time to make a change for both.
So, I whipped up the staff into a froth on Friday and got the doctor, discharge planner, nursing supervisor, and social worker all focusing on getting SAra out fo there. I don't care if she goes to KVRC or if we get trained at Walnut Creek, but she's coming home. I talked to Dr. Hospitalist at length on Saturday, and she totally concurred that it is time to transition her to home.
On Saturday, I transcribed a note for Sara to Kaiser to that effect. From Sara, basically saying she's ready to go. Help her family get her home. Thanks for saving her. Its time for her to go have a life.
We also talked about ways to make it easier to start talking to her friends again. She doesn't know what to say after all this time - where to start - are they even still there for her. She's afraid she's lost a few, because of how overwhelming this can be for anybody. She knows it may happen, but we have to get talking with them for her to find out. We came upon the fact that it would be easiest for her to answer questions first.
So, if anybody has questions for Sara, post them here and I'll ask her and post her responses. Or you can email me directly, or Daniel.
Then we'll get her emailing back and forth with her friends, questions, then whereever the interaction takes you guys. We won't post her communication device email out here in public, until she's fully ready.
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