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...
Subscribe to:
Posts (Atom)
