I had finals last week, which is why I haven't posted an update myself in a while. So with that over, I will once again be giving regular updates. (Although probably still at least a day late)
This sunday's visit was filled with art. I finally brought in a piece of art that one of Sara's online friends made for her and mailed. Sara was glad to get some mail and some new artwork for the room. I also brought in some works by one of her favorite artists (who's name I never actually learned, I just recognized the Logo). I also showed her some stuff that I picked up for myself. She was smiling the whole time.
Health wise she seems to be doing ok. Her oxygen was higher then I normally see it, But I guess they raise and lower it more often then I realized, So I think it wasn't out of the ordinary. She's been moving around a lot more when she coughs. yesterday she brought her knees up when she did. It's the most movement I've seen in a while. Her nurse was a bit surprised too.
Minor complaint for today: The nurse was a bit suction happy. Any time Sara's breaths had a gurgle in them, (which they do quite often) Rather then asking her if she wanted to be suctioned. She would just say "Sounds like you got some stuff down there, I'm going to suction you" (or something along those lines) Most of the time when she said this, Sara would blink twice, signaling 'no', but the nurse never seemed to agree.
~Daniel H.
Monday, May 26, 2008
Friday, May 23, 2008
Sending out her first emails...
Sara, using her dynavox computer, has sent out her first two emails.
I showed her how to do it the other night. She sent the first one to her beloved boyfriend Daniel (naturally) and then a fun one to the first person on her address list. She has to learn how to scroll down the list and select other people.
Its pretty incredible when you think that 7 months ago this girl had a stroke and was marked for brain dead...now she's blinking her way back onto the Internet and slowly back in contact with her circle of friends.
She gets impatient because the process is slow (waiting for the machine to scan to the line she wants, then she blinks to select it, then waiting for the machine to scan to the letter she wants, then blinking to select it, then starting all over again...letter by letter...). But she got a real thrill when she got responses and could read them herself, with no help. I have to help her figure out how to respond, and then she'll kick me out of helping there, too.
But she's doing it, ever so slowly.
You can't keep Sara down....
I showed her how to do it the other night. She sent the first one to her beloved boyfriend Daniel (naturally) and then a fun one to the first person on her address list. She has to learn how to scroll down the list and select other people.
Its pretty incredible when you think that 7 months ago this girl had a stroke and was marked for brain dead...now she's blinking her way back onto the Internet and slowly back in contact with her circle of friends.
She gets impatient because the process is slow (waiting for the machine to scan to the line she wants, then she blinks to select it, then waiting for the machine to scan to the letter she wants, then blinking to select it, then starting all over again...letter by letter...). But she got a real thrill when she got responses and could read them herself, with no help. I have to help her figure out how to respond, and then she'll kick me out of helping there, too.
But she's doing it, ever so slowly.
You can't keep Sara down....
Wednesday, May 21, 2008
In fair condition today
Sara's fever seems to have broken. She was 98 this morning, down from a steady 99.5 plus for the last 5-6 days. We still do not know the source of her infection, but she seems to be responding to antibiotics.
I was with her lastnight for a long time. It was a pretty hard night. She's struggling a lot to breathe deep and cough. She's moving stuff up out of her lungs but its hard on her. She has a lot more oral secretions and those are going down the back of her throat. She feels sometimes like she's going to choke and tries to force a cough. When she does cough, she launches herself forward (to the shock of everyone nearby) with as much force as she can muster. She's trying. We just kept suctioning her, rubbing the back of her neck (been hurting lately) and encouraging deep breathing. Her oxygen saturations were consistently lower lastnight (high 80s, low 90s) and I did not leave until I saw them in the upper 90s where they belong.
Nurse-Gerald is really good with her. He has been very vigilant about keeping her clean, cleaning any infection access point thoroughly, and having others check to ensure he hasn't missed anything. He's been making sure she's getting bathed twice a day, since she has had the fever and sweating and just gets real uncomfortable. I got a good look at her skin lastnight and she has no skin breakdown and is in very good condition all around. That 19 year old skin is perfect even after almost 7 months in bed.
She and I held hands and watched the Dancing with the Stars final (Yeah! Christy Yamaguchi won!!). We were both trying to watch, and her cough, and me suction, and a couple of times we ended up both laughing and coughing together when i'd swallow funny. Nurse-Gerald and I had trouble catching her a couple of times when she coughed. She's very strong. Don't make any mistake - she's still got muscles and a handful, voluntary or not.
Her eyes are tracking a little straighter, but not totally back the way they were. My gut is screetching at me to not ignore this and I'm trying to get ahold of the right person (her Neurologist and Neurosurgeon from Kaiser-Sacramento) to get their input. The fact that her fever seems to have broken this morning makes me feel better.
Obviously, moving to Kaiser-Vallejo and then home is on hold until she's stable again. Its so hard to keep her that way when she needs pulmonary rehab and is in the presence of so many nasty bugs around there. She and I are just trying to do our own rehab thing. The ICU staff is being very vigilant with her and contact precautions. They know how risky it is getting with her.
I have a call into her doctor again today to see if anything explanatory has grown out of cultures. And then I will get on the phone with Kaiser-Sacramento and her new primary care physician to get get us all on the same page.
I was with her lastnight for a long time. It was a pretty hard night. She's struggling a lot to breathe deep and cough. She's moving stuff up out of her lungs but its hard on her. She has a lot more oral secretions and those are going down the back of her throat. She feels sometimes like she's going to choke and tries to force a cough. When she does cough, she launches herself forward (to the shock of everyone nearby) with as much force as she can muster. She's trying. We just kept suctioning her, rubbing the back of her neck (been hurting lately) and encouraging deep breathing. Her oxygen saturations were consistently lower lastnight (high 80s, low 90s) and I did not leave until I saw them in the upper 90s where they belong.
Nurse-Gerald is really good with her. He has been very vigilant about keeping her clean, cleaning any infection access point thoroughly, and having others check to ensure he hasn't missed anything. He's been making sure she's getting bathed twice a day, since she has had the fever and sweating and just gets real uncomfortable. I got a good look at her skin lastnight and she has no skin breakdown and is in very good condition all around. That 19 year old skin is perfect even after almost 7 months in bed.
She and I held hands and watched the Dancing with the Stars final (Yeah! Christy Yamaguchi won!!). We were both trying to watch, and her cough, and me suction, and a couple of times we ended up both laughing and coughing together when i'd swallow funny. Nurse-Gerald and I had trouble catching her a couple of times when she coughed. She's very strong. Don't make any mistake - she's still got muscles and a handful, voluntary or not.
Her eyes are tracking a little straighter, but not totally back the way they were. My gut is screetching at me to not ignore this and I'm trying to get ahold of the right person (her Neurologist and Neurosurgeon from Kaiser-Sacramento) to get their input. The fact that her fever seems to have broken this morning makes me feel better.
Obviously, moving to Kaiser-Vallejo and then home is on hold until she's stable again. Its so hard to keep her that way when she needs pulmonary rehab and is in the presence of so many nasty bugs around there. She and I are just trying to do our own rehab thing. The ICU staff is being very vigilant with her and contact precautions. They know how risky it is getting with her.
I have a call into her doctor again today to see if anything explanatory has grown out of cultures. And then I will get on the phone with Kaiser-Sacramento and her new primary care physician to get get us all on the same page.
Sunday, May 18, 2008
Up and down couple of days
Sara's been struggling the last few days. She's had a fever for the last 4-5 days and having increasing trouble with her breathing. Yesterday they decided to transfer her back to the ICU to try and get a handle on her sepsis.
She has an infection somewhere. We don't know where. They've cultured everything - blood, stool, urine, sputum. She had a minor something in her urine, but most people have it off and on. That isn't causing what she's got.
We're starting to look at the unlikely locations of infection now - her PIC line, maybe her shunt. Both pretty far reaches, but something is going on. They are even culturing her for an internal fungal infection, since both her boyfriend and father have recently had them.
Despite this latest battle, she is in really good spirits. We are still focused on her coming home, albeit delayed. I have a chart up in her room with all the steps that have to happen to get her home. There is stuff for me to do, her to do, discharge planners to do, medical personnel to do. Its quite comprehensive - distilled from the loads of notes I get from the different entities. I thought that it had to be easier to see if it was all on one page...
She is doing better controlling her communication computer. The rep from Dynavox was there last week and did a couple of tweaks, and support sent me a couple of more. It seems to be working better. Sara still doesn't use it very often - she'd rather make someone use the manual letter board. I finally had to get tough about it and tell her that now that she had the tools and ability to do it herself, she was going to have to. She understands that. And the only way she'll get faster on it is if she uses it.
I get so many questions from people about "how does she use it". I should make a short video. It's actually pretty fascinating to see her do it, and amazing to think that this technology is not only out there, but in the hands, er, eyes?, of my child.
I got a broadband internet card for her and installed it on the machine. That way, when she's ready to try, she can go out to her favorite websites and see what's going on. I have to get the listing from her regular computer and program the shortcut buttons.
Well, I am a day and a half behind on my work,so I best get to it. I can't start another week behind because this database at work blew up. I gotta keep everything moving forward, everywhere...
She has an infection somewhere. We don't know where. They've cultured everything - blood, stool, urine, sputum. She had a minor something in her urine, but most people have it off and on. That isn't causing what she's got.
We're starting to look at the unlikely locations of infection now - her PIC line, maybe her shunt. Both pretty far reaches, but something is going on. They are even culturing her for an internal fungal infection, since both her boyfriend and father have recently had them.
Despite this latest battle, she is in really good spirits. We are still focused on her coming home, albeit delayed. I have a chart up in her room with all the steps that have to happen to get her home. There is stuff for me to do, her to do, discharge planners to do, medical personnel to do. Its quite comprehensive - distilled from the loads of notes I get from the different entities. I thought that it had to be easier to see if it was all on one page...
She is doing better controlling her communication computer. The rep from Dynavox was there last week and did a couple of tweaks, and support sent me a couple of more. It seems to be working better. Sara still doesn't use it very often - she'd rather make someone use the manual letter board. I finally had to get tough about it and tell her that now that she had the tools and ability to do it herself, she was going to have to. She understands that. And the only way she'll get faster on it is if she uses it.
I get so many questions from people about "how does she use it". I should make a short video. It's actually pretty fascinating to see her do it, and amazing to think that this technology is not only out there, but in the hands, er, eyes?, of my child.
I got a broadband internet card for her and installed it on the machine. That way, when she's ready to try, she can go out to her favorite websites and see what's going on. I have to get the listing from her regular computer and program the shortcut buttons.
Well, I am a day and a half behind on my work,so I best get to it. I can't start another week behind because this database at work blew up. I gotta keep everything moving forward, everywhere...
Tuesday, May 13, 2008
Goofy Girl
when she wants to make me laugh...
she looks at me, then crosses her eyes...
then laughs herself.
ever since her permanent shunt got put in she's been able to cross her eyes really well...and it makes her laugh.
I know people are craving updates
I'm sorry I have gotten so behind on keeping up. If I get any further behind I'll be ahead.
Ok. Sara is medically doing very well. No infections, fevers, etc. Her spirits have been pretty up, as she is starting to look forward to coming home.
As you can see, that is the main goal. I've given the discharge planners everything they were asking for towards getting the plan in place to bring her home. It is still set for her to go to Kaiser Vallejo for family training, but when is another question.
I put a chart up on her wall last week with what has to happen for her to come home. There is a list of stuff for Sara to do, a list for the discharge planners, for the medical staff, and a list for Mom. I have done all but two items on my list, and they will be done tomorrow.
I'll write it down and post it up here, so you guys can watch the progress of her coming home, too.
Basically, we got to the six month point and I said "cluck it...we're done...let's get you home." They're not doing anything significant for her. We will.
Many people have been giving me the "you don't know what you're getting yourself into" talk and I understand they mean well. Nobody has offered me a viable alternative to it. Its not better for her to go to another nursing home. Rehab won't take her. Acute care is more than she needs. And living the rest of her life in a hospital bed is just not going to happen. She deserves better.
So, that is the plan, the goal, the focus. I just want her home. She just wants to be home. It'll be hard, but I can take that kind of hard. The driving, gas costs, and short time I get to see her is just too much. This way, no driving, no gas costs, more time with her. Win. Win. Win. She gets to be where she wants, with her animals and family, and encouraged and helped to go further. Win. Win. Win.
And, with her closer, other people will get an opportunity to help with her. Many people have volunteered and want to, but the hospital environment has been quite prohibitive.
Anyway, there is the current. I'm trying to get time to keep up. Had some nice big issues at work (database blowing up and launching some major projects), and the drive is really starting to wear on me. So, i've just been walking past my computer on my way to sleep lately.
My mother-out-law is about to get on a plane and come out and kick my ass if I don't keep the entries up. I'm with her on this one. I do like to share. Anybody want to donate a couple of extra hours in the day to me?
Ok. Sara is medically doing very well. No infections, fevers, etc. Her spirits have been pretty up, as she is starting to look forward to coming home.
As you can see, that is the main goal. I've given the discharge planners everything they were asking for towards getting the plan in place to bring her home. It is still set for her to go to Kaiser Vallejo for family training, but when is another question.
I put a chart up on her wall last week with what has to happen for her to come home. There is a list of stuff for Sara to do, a list for the discharge planners, for the medical staff, and a list for Mom. I have done all but two items on my list, and they will be done tomorrow.
I'll write it down and post it up here, so you guys can watch the progress of her coming home, too.
Basically, we got to the six month point and I said "cluck it...we're done...let's get you home." They're not doing anything significant for her. We will.
Many people have been giving me the "you don't know what you're getting yourself into" talk and I understand they mean well. Nobody has offered me a viable alternative to it. Its not better for her to go to another nursing home. Rehab won't take her. Acute care is more than she needs. And living the rest of her life in a hospital bed is just not going to happen. She deserves better.
So, that is the plan, the goal, the focus. I just want her home. She just wants to be home. It'll be hard, but I can take that kind of hard. The driving, gas costs, and short time I get to see her is just too much. This way, no driving, no gas costs, more time with her. Win. Win. Win. She gets to be where she wants, with her animals and family, and encouraged and helped to go further. Win. Win. Win.
And, with her closer, other people will get an opportunity to help with her. Many people have volunteered and want to, but the hospital environment has been quite prohibitive.
Anyway, there is the current. I'm trying to get time to keep up. Had some nice big issues at work (database blowing up and launching some major projects), and the drive is really starting to wear on me. So, i've just been walking past my computer on my way to sleep lately.
My mother-out-law is about to get on a plane and come out and kick my ass if I don't keep the entries up. I'm with her on this one. I do like to share. Anybody want to donate a couple of extra hours in the day to me?
Tuesday, May 6, 2008
5/4/08
Sunday was a short visit this week. I had a speech I needed to write, and unfortunately I needed internet access, which the hospital lacks. However in that short amount of time I showed Sara a few things that some people at her online art community have been doing for her. They made her a short video, and one of the members actually sang a song for Sara. She loved them both. Afterwards, I set up "Robin Hood, Men in tights" and did as much on my speech as I could while she watched. After it was over, I told her I needed to get back home, made sure she was comfortable and turned on comedy central for her.
Medically she seems to be doing pretty well. She is apparently communicating with the nurses using her computer. Her nurse walked in shortly after I did, Sara was still smiling at me. The nurse looked at her, then me, then back at her and said something along the lines of: "Oh, I see. Is this him?" So apparently Sara has gotten to the point of being able to gossip about me using that computer. That's a good thing for her. Though I'm still not sure what that means for me...
~Daniel H.
Medically she seems to be doing pretty well. She is apparently communicating with the nurses using her computer. Her nurse walked in shortly after I did, Sara was still smiling at me. The nurse looked at her, then me, then back at her and said something along the lines of: "Oh, I see. Is this him?" So apparently Sara has gotten to the point of being able to gossip about me using that computer. That's a good thing for her. Though I'm still not sure what that means for me...
~Daniel H.
Friday, May 2, 2008
Six months 7 days
She did the most amazing thing yesterday.
I mentioned before that she's been lifting her hands up off the bed (make fists, shakes a lot, but they get up off the bed and she is WORKING it.). Well, yesterday she held the sheets with her left hand and lifted up only her right arm, then (shakily) moved it until she could put her hand down on mine. We both cried. I remember the first time she reached out to me as a baby and took my hand, and this was even more meaningful. It is so different from picking up and holding her hand. To see her working so hard for something as sweet and simple as holding hands - and then to feel the warmth and weight of her hand touch mine - overwhelming.
We spent the rest of the evening watching TV and holding hands.
That's way better than stopping to smell the roses...
I mentioned before that she's been lifting her hands up off the bed (make fists, shakes a lot, but they get up off the bed and she is WORKING it.). Well, yesterday she held the sheets with her left hand and lifted up only her right arm, then (shakily) moved it until she could put her hand down on mine. We both cried. I remember the first time she reached out to me as a baby and took my hand, and this was even more meaningful. It is so different from picking up and holding her hand. To see her working so hard for something as sweet and simple as holding hands - and then to feel the warmth and weight of her hand touch mine - overwhelming.
We spent the rest of the evening watching TV and holding hands.
That's way better than stopping to smell the roses...
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