Sara Continues to do well. She is still in the ICU, and will remain there. Not because she Isn't getting better, but Kristina is more comfortable having Sara in view of the nurses station and with a better patient to nurse ratio. I agree.
Sara has been in the ICU long enough for some of the nurses and respiratory staff to get to know her. I noticed today that pretty much everybody who came into her room had some experience communicating with her. That made me feel a lot better. The nurses were asking Sara if she needed anything, not me. Not having to help nurses communicate with her was a nice change of pace.
I had some fun with Sara's computer today. And by fun, I mean confusion. I was encouraging Sara to use this nifty piece of equipment by sitting on the opposite side of the screen and waiting for her to spell something out and make the computer say it. Well.... I waited for a good half hour without hearing a single thing from the computer. Eventually, I noticed Sara blinking rapidly at me and went over to check things out. She had a sentience typed up on the screen, but whenever Sara selected it to be spoken, it instead started cycling through options again. I tried to do it manually, and got the same results. So, this piece of equipment, apparently has some setting that needs to be adjusted to make it speak like it's supposed to. At least she was able to spell out stuff on her own though.
I also brought something other then a hospital gown for Sara to wear. I know she is tired of the blue gowns they have. Other then that we just watched more DVD's. today was disc 3 of an anime series that I cant rember how to spell off the top of my head, so it shall remain nameless. Next time I'm up, I'm going to start reading her "Ender's Game"
~Daniel H.
Monday, March 31, 2008
Thursday, March 27, 2008
Results of CT Scan
Sara had a CT scan yesterday. Doctors have been chasing the fluid in her lungs and plural space and she still showed a lot of fluid on the last XRay. So, I discussed it with Dr. Hospitalist and she felt that the best way to know for sure what was up with her left lung was to do a CT scan.
Today I got a call from her that Sara's lungs are actually completely clear. The XRays have been unclear with regards to her lower left lobe and that coupled with the secretions was leading them towards another indication of pneumonia. Well, that assumption is now gone. Dr. Hospitalist told me that she thinks I was right in my theory that Sara's increased secretions were due to her new activity level and the trauma to her traechea when her tube moves. We discussed resuming the plan to decanulate Sara, albeit slowly.
I spent time goofing around with the girl. She was in a weird mood today. Not really expressive, kinda moody actually. So we just sat there and watched a movie while I moved her legs. I noticed that her oxygen has been turned back down to 30%. (Monday it was up at 50%) Her heart rate, respiration and oxygen saturations all look real good, and she is coughing strong when she needs to. Looks like she's back on her way towards getting rid of the tubes.
Today I got a call from her that Sara's lungs are actually completely clear. The XRays have been unclear with regards to her lower left lobe and that coupled with the secretions was leading them towards another indication of pneumonia. Well, that assumption is now gone. Dr. Hospitalist told me that she thinks I was right in my theory that Sara's increased secretions were due to her new activity level and the trauma to her traechea when her tube moves. We discussed resuming the plan to decanulate Sara, albeit slowly.
I spent time goofing around with the girl. She was in a weird mood today. Not really expressive, kinda moody actually. So we just sat there and watched a movie while I moved her legs. I noticed that her oxygen has been turned back down to 30%. (Monday it was up at 50%) Her heart rate, respiration and oxygen saturations all look real good, and she is coughing strong when she needs to. Looks like she's back on her way towards getting rid of the tubes.
Tuesday, March 25, 2008
Saturday is Moving Day
We will be officially moving into the new place on Saturday. I'll be getting a truck with a ramp to make things easier to get stuff in and out of.
Anybody who would like to give us a hand would be greatly appreciated. We don't have a lot of stuff, except in the garage. That may be the easiest part. Roll into truck (I have hand truck and furniture movers) and roll back out into the garage.
Anyway, I'll have plenty of cold drinks and pizza on hand for anybody who gives a hand.
If you want to help, just shoot me an email at netzillakb at gmail dot com.
WooHoo - its finally here. And then we'll finally have a place we can bring Sara home to.
Anybody who would like to give us a hand would be greatly appreciated. We don't have a lot of stuff, except in the garage. That may be the easiest part. Roll into truck (I have hand truck and furniture movers) and roll back out into the garage.
Anyway, I'll have plenty of cold drinks and pizza on hand for anybody who gives a hand.
If you want to help, just shoot me an email at netzillakb at gmail dot com.
WooHoo - its finally here. And then we'll finally have a place we can bring Sara home to.
Wikipedia ought to add this under "Determination"
5 Months to the day and she is lifting her arms. She ended up having to do it 4 times for me to get a picture.
Sorry about the picture quality. Taken with phone, and that's why it took 4 tries for a "decent" one...
Sara is doing MUCH better
Ok. Sara had a procedure called a Thoracentesis last night. It went very well and she started doing better almost immediately.
Her heartrate had been way up, as were her respirations. For a couple of days she had been laboring with very shallow breaths. To make matters worse, her left lung is full of fluid, so she was working with one lung.
The night before the RT had suggested that it may be best to put her back on the ventilator, just to give her a break. She refused and I supported it. I told them they would have to find a different way to help her. The only exception to that is that they could put her back on the ventilator to save her life, or after code recusitation. I asked Sara if I was right in this, and she agreed. So, the doctors and RTs had to get together and dig a little deeper as to what is going on with her. They are doing a great job doing so, and I am very happy with the current team. They are supportive of Sara and attentive to her needs and goals.
This kid just knocks me out. Even in the midst of laboring to breathe, sweating from the work, feeling like she needs to be suctioned constantly there are two things she wanted to do yesterday: show me she could lift her arms, and have her limbs moved very often and start resisting when they are moved. A M A Z I N G. She's digging in and working that lock with everything she's got.
But, as I left last night, she was much more comfortable breathing, as she is also today. We're letting her rest, although she has the nurses moving her limbs almost every time they go in the room. The nurse today has asked for a neuro consult, as she is obviously doing more things showing readiness for rehab. (although it doesn't technically change her FIM score.)
Her heartrate had been way up, as were her respirations. For a couple of days she had been laboring with very shallow breaths. To make matters worse, her left lung is full of fluid, so she was working with one lung.
The night before the RT had suggested that it may be best to put her back on the ventilator, just to give her a break. She refused and I supported it. I told them they would have to find a different way to help her. The only exception to that is that they could put her back on the ventilator to save her life, or after code recusitation. I asked Sara if I was right in this, and she agreed. So, the doctors and RTs had to get together and dig a little deeper as to what is going on with her. They are doing a great job doing so, and I am very happy with the current team. They are supportive of Sara and attentive to her needs and goals.
This kid just knocks me out. Even in the midst of laboring to breathe, sweating from the work, feeling like she needs to be suctioned constantly there are two things she wanted to do yesterday: show me she could lift her arms, and have her limbs moved very often and start resisting when they are moved. A M A Z I N G. She's digging in and working that lock with everything she's got.
But, as I left last night, she was much more comfortable breathing, as she is also today. We're letting her rest, although she has the nurses moving her limbs almost every time they go in the room. The nurse today has asked for a neuro consult, as she is obviously doing more things showing readiness for rehab. (although it doesn't technically change her FIM score.)
Out of surgery
So, apparently the surgery got delayed until rather late. They just finished about an hour ago. Sara is doing well. What they did seems to have helped her. Her heart rate is back down and she is breathing normally again. They are going to do an Ultrasound in the morning to follow up on things.
~Daniel H.
~Daniel H.
Monday, March 24, 2008
Surgery
Sara is in surgery again right now as far as I know. Apparently her left lung had almost completely filled up with fluid. I forget the name of the surgery but, it doesn't sound pleasant. They are going to give Sara a local anesthetic for her chest, and then stick a needle into her and drain the fluid out of her lungs directly. There is risk with this procedure, but at this point the benefits outweigh the risks.
I'll give an update as soon as I know more.
I'll give an update as soon as I know more.
Details of the events leading to ICU
Sara was doing fine last week. I had been keeping up with Dr. Hospitalist and Dr. Pulmonologist regarding her weaning and she was doing great. They decided to go ahead and try a traech mask for her on Friday. That means she'd be disconnected from the supplemental oxygen and tubing. It is the last step before removing the traech from her throat and her going back to oral/nasal breathing.
Well, initially on Friday she did great. She had been on 28% oxygen and room air is 21%. Well, after a couple of hours her oxygen saturations dropped and she started laboring. So they put her back on the supplemental oxygen and ran it up to 40% to give her some relief and let her rest.
Later in the afternoon, they ordered a traech change from a size 8 to a size 6, and one that could accomodate a finestrated canula. (an internal tube with holes in the top so she can get air up into her mouth/nose and past her vocal cords). The initial tube is solid, so it is a direct replacement for the larger size. WHile this is a "cuffed" tube (has an inflatable donut around the base of the tube to keep air from moving past, they opted not to inflate. This was to further give her ability to move air at will. (and she's been blowing bubbles ever since.)
Unfortunately, the tube that was in there was lodged pretty good and it took a bit of force to get it out, and caused a bit of trauma in her neck and opening (which bled). The new tube also has the ability to move up and down, so it moves around a bit. That apparently tickles in her throat. It also caused her secretions to go up. The internal airway protects itself from trauma by secreting snotty mucus, and that has gone up quite a bit.
Initially we weren't worried about it, as this is actually quite normal. It did make her uncomfortable and she required a lot of reassurance. So I decided to stay with her until she felt more at ease. That kept me there well into the wee hours of the morning, as she really never was comfortable.
When moving her from the bed to the chair (which helps circulation and respiration - both good things) she started coughing (while flat) and coughed up a lot of stuff up into her tubing. It started choking her and the nurse jumped past the lift team guy and started suctioning her. Sara kept choking and coughing and her oxygen saturations started dropping. I saw this and jumped past the other lift team guy to get to her head and into her face. I put my right hand behind her head and started reassuring her and encouraging her cough, telling her the nurse was getting it. More kept coming and her sats kept dropping, below 90, below 80, 70s... I was calling the numbers out to the nurse as I could see them from my periphery. I told her we needed help (because I was getting pretty terrified at this point and Sara was downright freaked)
The nurse actually ran out of the room. I nearly passed out when she did. I couldn't believe it. I grabbed the suction canula and started going for it - SAra wasn't moving air. I heard the nurse yell for an RT and some help. I'm suctioning SAra like a vacuum cleaner, in and out without turning off the suction. I was worried I'd hurt her, but she was already hurt by this point and a little more trauma was not the issue. A lot of stuff came up and then when pulling back I could hear the raspy gurle of air movement. She pulled in a big breath and I suctioned again, getting more. The nurse was back now and another nurse with her. I dropped the suction as I pulled it out, and heard more air movement. She was breathing. I moved a little more up towards her head and kept my eyes on her, talking to her, assuring her that she was ok and Nurse-Carol was going to get the rest. Her sats were coming up - 80s, 90 - more deep breaths baby girl - 93, 94. She was breathing short and rapid, but moving air.
Then she started to cry. She was so scared. I cried with her. I was scared too. That was close, I told her. Good thing you can cough good. Better getting that stuff out than keeping it in. (like Nurse-Athie always says "better out than in..." I put my hand on her chest, feeling it rise and fall, her heartbeat riding quickly over the waves of her breaths. Slow down, deep slow breaths, time to calm down. Your numbers are good, you are moving air, i'm right here, you're ok. Steady stream of reassurance, for both of us. After a long few minutes she was upright in the chair and we were calming and watching some mindless TV. No doubt her thoughts were on what happened, as were mine, but we just sat there holding hands, feeling each other there.
That was Friday, Friday night and early Saturday morning.
Her father, Tracy, went to the hospital and saw his girl for a few hours Saturday morning. He had to suction her a lot himself, but she seemed to be doing ok.
Oop. gotta go. just got a call from the hospital. i'll have to update from there. KB
Well, initially on Friday she did great. She had been on 28% oxygen and room air is 21%. Well, after a couple of hours her oxygen saturations dropped and she started laboring. So they put her back on the supplemental oxygen and ran it up to 40% to give her some relief and let her rest.
Later in the afternoon, they ordered a traech change from a size 8 to a size 6, and one that could accomodate a finestrated canula. (an internal tube with holes in the top so she can get air up into her mouth/nose and past her vocal cords). The initial tube is solid, so it is a direct replacement for the larger size. WHile this is a "cuffed" tube (has an inflatable donut around the base of the tube to keep air from moving past, they opted not to inflate. This was to further give her ability to move air at will. (and she's been blowing bubbles ever since.)
Unfortunately, the tube that was in there was lodged pretty good and it took a bit of force to get it out, and caused a bit of trauma in her neck and opening (which bled). The new tube also has the ability to move up and down, so it moves around a bit. That apparently tickles in her throat. It also caused her secretions to go up. The internal airway protects itself from trauma by secreting snotty mucus, and that has gone up quite a bit.
Initially we weren't worried about it, as this is actually quite normal. It did make her uncomfortable and she required a lot of reassurance. So I decided to stay with her until she felt more at ease. That kept me there well into the wee hours of the morning, as she really never was comfortable.
When moving her from the bed to the chair (which helps circulation and respiration - both good things) she started coughing (while flat) and coughed up a lot of stuff up into her tubing. It started choking her and the nurse jumped past the lift team guy and started suctioning her. Sara kept choking and coughing and her oxygen saturations started dropping. I saw this and jumped past the other lift team guy to get to her head and into her face. I put my right hand behind her head and started reassuring her and encouraging her cough, telling her the nurse was getting it. More kept coming and her sats kept dropping, below 90, below 80, 70s... I was calling the numbers out to the nurse as I could see them from my periphery. I told her we needed help (because I was getting pretty terrified at this point and Sara was downright freaked)
The nurse actually ran out of the room. I nearly passed out when she did. I couldn't believe it. I grabbed the suction canula and started going for it - SAra wasn't moving air. I heard the nurse yell for an RT and some help. I'm suctioning SAra like a vacuum cleaner, in and out without turning off the suction. I was worried I'd hurt her, but she was already hurt by this point and a little more trauma was not the issue. A lot of stuff came up and then when pulling back I could hear the raspy gurle of air movement. She pulled in a big breath and I suctioned again, getting more. The nurse was back now and another nurse with her. I dropped the suction as I pulled it out, and heard more air movement. She was breathing. I moved a little more up towards her head and kept my eyes on her, talking to her, assuring her that she was ok and Nurse-Carol was going to get the rest. Her sats were coming up - 80s, 90 - more deep breaths baby girl - 93, 94. She was breathing short and rapid, but moving air.
Then she started to cry. She was so scared. I cried with her. I was scared too. That was close, I told her. Good thing you can cough good. Better getting that stuff out than keeping it in. (like Nurse-Athie always says "better out than in..." I put my hand on her chest, feeling it rise and fall, her heartbeat riding quickly over the waves of her breaths. Slow down, deep slow breaths, time to calm down. Your numbers are good, you are moving air, i'm right here, you're ok. Steady stream of reassurance, for both of us. After a long few minutes she was upright in the chair and we were calming and watching some mindless TV. No doubt her thoughts were on what happened, as were mine, but we just sat there holding hands, feeling each other there.
That was Friday, Friday night and early Saturday morning.
Her father, Tracy, went to the hospital and saw his girl for a few hours Saturday morning. He had to suction her a lot himself, but she seemed to be doing ok.
Oop. gotta go. just got a call from the hospital. i'll have to update from there. KB
Sunday update
Sara seemed to be doing well enough today. I still don't know how bad she was yesterday, so I can't really compare. We did our usual thing of watching movies. Today was "Austin Powers: The Spy who Shagged Me" and "Snakes on a Plane". I did notice she needed more suctioning then usual. But now that she is actually willing to tell me when she needs it, its not as big of a problem. She used to never admit to needing it. (I don't blame her though, it must be all kinds of uncomfortable) She wanted me to move her limbs around a lot today. Not because they were sore or in pain though, She just wanted to feel them moving. Every half an hour or so, she would ask me to move her limbs. I would move her arms and legs around, taking care not to yank out any tubing. I would also move her head around a bit every now and then. Apparently her pillow wasn't doing the best job at supporting her head, so I made a narrow roll out of a towel and put it behind her neck. Before I left, she let me know that her head was uncomfortable once again. None of my suggestions seemed to fix the problem, so I had her spell out what she wanted me to do.
This is what she gave me: "Put a doughnut under my head"
That one had me puzzled for a few minutes. After confirming several times that she didn't want me to put an actual doughnut under her head (I thought it was a funny idea) i started folding the towel and placing it in various "Doughnut like" shapes and positions. I eventually found one that was acceptable. What I wound up with was sort of like a halo supporting her head on the pillow. With the bottom of it supporting her neck, and the rest of it keeping her head from rolling side to side. She seemed happy with it. I left her watching Futurama on the TV. Before I left the ICU I asked her nurse about Sara's splints, and how they were doing her schedule for that. Apparently they had been on for qutie some time, after being off for even longer. So the nurse actually wrote up a schedule for them, by hand, and posted it in Sara's room. I thought that was really nice of her.
On a "not specifically related to Sara's care" note.
I've noticed that nobody on the staff asks the patients what they want to watch on TV, they just turn it on and leave it on the first channel that pops up. And although fox news might be ok for some people.... it doesn't really hold the interest of younger people. And sometimes the stuff that gets left on is painful (metaphorically of course) to watch. One day when I came in, the TV had been turned to a car racing channel. Apparently Sara hates racing. (although that may just be a result of being forced to watch it for who knows how many hours) I left a note on the board in Sara's room asking them to put the TV to chanel 53 (Nickelodeon) whenever they turn it on for her. She always asks me to put it on Nick for her so she can watch "Sponge Bob Square Pants".
~Daniel H.
This is what she gave me: "Put a doughnut under my head"
That one had me puzzled for a few minutes. After confirming several times that she didn't want me to put an actual doughnut under her head (I thought it was a funny idea) i started folding the towel and placing it in various "Doughnut like" shapes and positions. I eventually found one that was acceptable. What I wound up with was sort of like a halo supporting her head on the pillow. With the bottom of it supporting her neck, and the rest of it keeping her head from rolling side to side. She seemed happy with it. I left her watching Futurama on the TV. Before I left the ICU I asked her nurse about Sara's splints, and how they were doing her schedule for that. Apparently they had been on for qutie some time, after being off for even longer. So the nurse actually wrote up a schedule for them, by hand, and posted it in Sara's room. I thought that was really nice of her.
On a "not specifically related to Sara's care" note.
I've noticed that nobody on the staff asks the patients what they want to watch on TV, they just turn it on and leave it on the first channel that pops up. And although fox news might be ok for some people.... it doesn't really hold the interest of younger people. And sometimes the stuff that gets left on is painful (metaphorically of course) to watch. One day when I came in, the TV had been turned to a car racing channel. Apparently Sara hates racing. (although that may just be a result of being forced to watch it for who knows how many hours) I left a note on the board in Sara's room asking them to put the TV to chanel 53 (Nickelodeon) whenever they turn it on for her. She always asks me to put it on Nick for her so she can watch "Sponge Bob Square Pants".
~Daniel H.
Sunday, March 23, 2008
Eventful Friday and Saturday
Sara is back in the ICU. She kind of did a hard left turn on us the last two days.
Her lungs and traech are filling up with fluid and she is requiring almost constant suctioning. She feels like she can't get enough air or that she's drowning and it is very frightening to her. (hell, that feeling would be frightening to anyone.)
So, Dr. Hospitalist decided that it would be best to throw a battery of tests at her to make sure we weren't missing some bug, and move her back down to ICU. There the nursing ratio is 1 nurse to 2 patients, instead of 1 to 4. They also placed her within view of the nursing station.
Shortly after Michael and I left the F.I.R.S.T. Robotics Davis Regional I got a call from Mike (who spends every saturday with Sara). He said that the Dr. needed to talk to me. That's when it was decided it was best for her to move back down. Michael and I were there about 30 minutes later. It took another 7 hours to get her moved to ICU. In that time period, we all three took turns sucntioning her, moving her legs, and hanging out with her.
Once she got moved to ICU, I figured it'd be best if only one adult stayed. So, Mike took him and Michael home from the hospital. Sara and I, and two RTs, and two nurses, spent until 0500 trying to get her comfortable, suctioned enough and feeling better enough to sleep and let me go home.
I am exhausted. I promise to expand on the last two days after I wake up. But if I don't close my eyes right now my head will explode.
Her lungs and traech are filling up with fluid and she is requiring almost constant suctioning. She feels like she can't get enough air or that she's drowning and it is very frightening to her. (hell, that feeling would be frightening to anyone.)
So, Dr. Hospitalist decided that it would be best to throw a battery of tests at her to make sure we weren't missing some bug, and move her back down to ICU. There the nursing ratio is 1 nurse to 2 patients, instead of 1 to 4. They also placed her within view of the nursing station.
Shortly after Michael and I left the F.I.R.S.T. Robotics Davis Regional I got a call from Mike (who spends every saturday with Sara). He said that the Dr. needed to talk to me. That's when it was decided it was best for her to move back down. Michael and I were there about 30 minutes later. It took another 7 hours to get her moved to ICU. In that time period, we all three took turns sucntioning her, moving her legs, and hanging out with her.
Once she got moved to ICU, I figured it'd be best if only one adult stayed. So, Mike took him and Michael home from the hospital. Sara and I, and two RTs, and two nurses, spent until 0500 trying to get her comfortable, suctioned enough and feeling better enough to sleep and let me go home.
I am exhausted. I promise to expand on the last two days after I wake up. But if I don't close my eyes right now my head will explode.
ICU again
Sara got Pneumonia again and is back in the ICU. At this point, thats as much information as I have.
~Daniel H.
~Daniel H.
Thursday, March 20, 2008
Update.... kinda.
So, I went and saw Sara last night. Kristina was swamped with stuff regarding moving, so I volunteered to go up. I didn't get up there till late though. I had class and an appointment to go to before hand. So I didn't get to the hospital until around 8. Sara was very glad to see me. Apparently she was getting worried that nobody was going to show up. She seemed to be doing pretty well. As far as I know, nothing on her status has changed. So I just hung around and we watched the "Animatrix". I hung around till about 10:45. before she would let me leave, she had me chasing itches. She's so silly.
~Daniel
~Daniel
Monday, March 17, 2008
Sunday stuff, and some observations too!
Today was another low key day with Sara. We spent the afternoon watching "Most Extreme Elimination Challenge" (MXC). My dad stopped by for a quick visit too. That was nice. He hadn't seen Sara in quite some time. Only thing medically interesting is, I found out that there is apparently no order for the nurses to be putting on Sara's foot and hand bracer's. She is supposed to have them on periodically. I know that myself, Kristina, and Mike put them on her when we visit. But apparently, unless we have told the nurses to do so, It hasn't been getting done otherwise. I informed Kristina about this, so it shouldn't be a problem anymore. I showed tonights nurse how to put them on. And she picked some times to take them on and off for the rest of her shift.
Ok, that is the end of the relevant stuff. The rest of this entry is just some observations/gripes I've made regarding Nurses having problems adjusting to communicating with Sara.
I know Kristina has noticed this, and I'm starting to notice it more too now. People unconsciously talk to Sara in a loud voice, I think peoples minds put them under the assumption that she has trouble understanding things because she can't talk I guess... Today's nurse was particularly bad about it. Also, she kept asking Me what Sara wanted, as though I could read her mind. I kept telling her "I don't know, ask her." After I explained how Sara communicates, she got a bit better about it. I've noticed that often, nurses will ask Sara a question without first Knowing how Sara Answers.
Nurse:"How are you doing today?"
Sara: *blink*
Nurse: "What does that mean?"
Me: *sigh*
I don't blame them for their initial question being a non yes/no question, although it can get annoying for me sometimes. It takes a bit of conscious thought to form all your questions into Yes/no format. I know it took me a while. I just wish they could learn how to do basic communication with Sara without somebody else's help. Like perhaps put it in Sara's chart. Because most of them don't see the sign posted over Sara's bed with the communication info on it. Sometimes I worry that a nurse will have no idea how to communicate with Sara and will either stop trying, or just assume she can't communicate at all. I've also noticed that most of the nurses Don't know when Sara is trying to get their attention. (She will start blinking constantly until it is recognized that she has the targets attention) That seems like another thing that would be worth putting in her chart. (I don't even know if Sara's chart would be an appropriate place for this stuff, But I hear nurses saying stuff about seeing or not seeing something in a patient's chart all the time. I figure it would be a good start.)
~Daniel H.
Ok, that is the end of the relevant stuff. The rest of this entry is just some observations/gripes I've made regarding Nurses having problems adjusting to communicating with Sara.
I know Kristina has noticed this, and I'm starting to notice it more too now. People unconsciously talk to Sara in a loud voice, I think peoples minds put them under the assumption that she has trouble understanding things because she can't talk I guess... Today's nurse was particularly bad about it. Also, she kept asking Me what Sara wanted, as though I could read her mind. I kept telling her "I don't know, ask her." After I explained how Sara communicates, she got a bit better about it. I've noticed that often, nurses will ask Sara a question without first Knowing how Sara Answers.
Nurse:"How are you doing today?"
Sara: *blink*
Nurse: "What does that mean?"
Me: *sigh*
I don't blame them for their initial question being a non yes/no question, although it can get annoying for me sometimes. It takes a bit of conscious thought to form all your questions into Yes/no format. I know it took me a while. I just wish they could learn how to do basic communication with Sara without somebody else's help. Like perhaps put it in Sara's chart. Because most of them don't see the sign posted over Sara's bed with the communication info on it. Sometimes I worry that a nurse will have no idea how to communicate with Sara and will either stop trying, or just assume she can't communicate at all. I've also noticed that most of the nurses Don't know when Sara is trying to get their attention. (She will start blinking constantly until it is recognized that she has the targets attention) That seems like another thing that would be worth putting in her chart. (I don't even know if Sara's chart would be an appropriate place for this stuff, But I hear nurses saying stuff about seeing or not seeing something in a patient's chart all the time. I figure it would be a good start.)
~Daniel H.
Saturday, March 15, 2008
Got the keys, baby!
Signed the lease on the new place last night. I've already been over there this morning. I'm getting ready to do my pre-move-in cleaning thing. I know i'm pretty anal about cleaning my house, but that's not a bad compulsion. You would not know it by the current condition of this place. I haven't done anything major since she left Sacramento. I'd love to take a week off and do nothing but clean and paint and listen to music and bake. Yeah...i'm a little weird. But it works for me.
So, I have both places for the next month. That will give me plenty of time to clean the new place, painting, do some of the mods and fixes, and move. Then i'll have this place, completely clear so that I can do the cleaning, fixes, painting and leave this place TRULY move-in ready. That way I can get back every dollar of the deposit. I've been clearing military quarters my entire life, and i've never lost a dollar to a deposit in the civilian world. Not going to start losing money now. I always leave places better than I got them.
Ok. gonna take Michael to breakfast for his birthday. He is 17 today!. My baby boy is growing up and is such a sweetheart. Then we're going to Lowe's and get some paint for the new garage (its as dark as a cave in there...)
So, I have both places for the next month. That will give me plenty of time to clean the new place, painting, do some of the mods and fixes, and move. Then i'll have this place, completely clear so that I can do the cleaning, fixes, painting and leave this place TRULY move-in ready. That way I can get back every dollar of the deposit. I've been clearing military quarters my entire life, and i've never lost a dollar to a deposit in the civilian world. Not going to start losing money now. I always leave places better than I got them.
Ok. gonna take Michael to breakfast for his birthday. He is 17 today!. My baby boy is growing up and is such a sweetheart. Then we're going to Lowe's and get some paint for the new garage (its as dark as a cave in there...)
Discharge Planning Meeting
I had a meeting yesterday at Kaiser. It was the first of our discharge planning meetings. We discussed the next phase for Sara. I was trying to get some discussion as to what we were going to do next with regards to her traech, but it turned into the full-blown all hands meeting. That's cool.
Dr. Hospitalist started off by letting me know what her current condition is. He says she is over the pneumonia and medically stable. His only concern is the occasional low-grade fever and a borderline white cell count. Other than that, she shows nothing else that indicates any lingering illness. He said that her last lung sputum culture did not grow anything except colony bacteria. (colonization of bacteria in the lungs is not uncommon in ventilator-dependent patients - which she was for months.) She is clear of MRSA, Acinetobacter and other agressive, often fatal bacteria. He states that it is ok to start looking at her next level of care, although he does not wish to discharge her immediately.
Ms. Discharge Planner (this is a new on - not the one from Sacto) said she has made contact with 4 possible facilites that would likely accept her. I reminded her that my intent was to bring Sara home after Walnut Creek. Dr. Hospitalist said he would want to understand that I knew what that meant, and why I wanted to, but we'd come back to that. Ms. Discharge Planner continued and said that Rossmoor would accept her back and I nearly came out of my chair. I actually raised my voice and scared the hell out of the 6 other people in the room. "No Way is my daughter going back into that place. 7 days. 7 days is all it took for them to let her go from smiling, breathing easy, bright eyes, hopeful - to pneumonia, shutting down kidneys, borderline sepsis, respiratory distress, and scared for her life. And I was there, every day, fighting them to take care of her, coaching them on what she needed, and they ignored me STILL managed to almost kill her. No way. My daughter is NEVER going back into a facility like that. I promised her that. No Way. Period."
And then I gently apologized. I just couldn't do that to her, or let anybody make me do that to her, again. Not again.
Ms. Discharge Planner continued, stating that she understood that from our conversations, but that she felt it would be remiss on her part if she did not help support me bringing her home, and continue to look other options in case that became not possible for any reason. Ok, I said. I understand that. But Rossmoor will never be on that list... She said there was a place in San Leandro, Healdsburg, and some other place near walnut creek. I told her that we don't live down here, so all those are out. She's been away from home for almost 5 months and medically she is getting better and stronger, but psychosocially she needs to reconnect with her life, her friends, HER support group and community. I didn't like Healdsburg, but if we have to and it is close, we'll go there. I will send her the information for Evergreen in Petaluma, so she can check it out, too.
Ms. Home Care Coordinator popped in now and started going over the MediCAL realities, and stuff, programs. She didn't tell me anything I hadn't already found out, but I think she'll be a real good source for making easier contact with MediCAL program nurses. I like how straightforward she was.
Then they asked me why I was so intent on bring her home - not that there is anything wrong with that, but it will be hard. So I told them..
Rossmoor was a good facility. Everyone who said anything about it said it was good. I went there myself and there was no urine smell, patients weren't yelling for help, it was clean, staff looked happy and attentive to patients. But this good facility was the wrong facility for Sara. What happened to her care aside, it was the wrong environment. You know that nursing homes, skilled nursing facilities, whatever you want to call them, has a specific mission or function in the care cycle. They are there to maintain the body, at the same level, until the point of death. They are not there to help heal, or improve. They do not have the resources or focus to try and improve anybody's condition or outcome. If the body declines they have to send it to a higher level of care, if it gets better it goes home. But, on the whole, it is passive medicine. AND, if you have a patient, such as Sara, who is caught in the quagmire of a diagnosis/prognosis that doesn't afford even acute care any idea how to help her - well, skilled nursing has absolutely NO chance of helping her.
Sara, ON HER OWN, has challenged herself and everyone around her, to give her what she needs to improve. She understands completely that we are all in uncharted territory here. She is young, bright, and actually pretty happy. Dr. Hospitalist said he noticed that too. I said that everyone around her has seen her work to improve. The RTs see her do neck curls after coughing. She's working her own neck herself to try and improve. You stopped PT WITH her and she continues to do it without you. She looks to us, her loved ones, to help her where others will not. And we absolutely do and will continue. She smiles, open and closes her mouth, makes faces at the nurses, moves her head. Make no mistake. Those you look at and see social interaction. I look at that and see both social interaction and her working. I've peeked around the curtain where she couldn't see me, and seen her working her jaw and mouth. She even got her own mouth open, by slowly working it, after months of being in an aspen collar. She worked on her own swallow after I let her watch me do it a couple of times with my mouth partially open, so she could remember and mimic. Now she clears a lot of her own oral secretions.
And then I asked them..."Does this sound to you like somebody who needs to go to a place, where the focus and entire environment is there to maintain the body in its CURRENT state, until the point of death?"
And then they got it... Dr. Hospitalist actually shook my hand and told me he just learned something from me.
I said, listen, I know its going to be hard. But the alternative is clearly not acceptable and is not in HER best interest. She has committed to doing everything she can to get better and she trusts me, not just as her mother, but as the person who is now legally responsible to ensure her wishes are carried out. She trusts me to get her anything she needs. And she knows I will do it. I said I know if it were reversed that she would do the same, regardless.
So, that's why she's coming home. If she can't get rehab in the system, and the help to take herself further still, then we will build whatever is necessary, learn whatever is necessary, do whatever it takes to get it for her. And, at the same time, she will be surrounded by her family, friends, pets - in her own home with her own things on the walls - in the community she grew up in and that has supported her family so dearly since her accident. Its time. And it would be harder NOT to do it now, knowing that.
There was a long moment in the room - I could feel everyone taking it in for themselves. I know on the surface they are seeing a mother fighting for her child, but I know that each of them was internalizing bits and pieces of my argument.
And then I addressed Dr. Hospitalist. So, knowing that she has now worked her way off the ventilator and not getting any pulmonary rehab, what can we actually do to help her while she is still in this environment? Her goal on January 1st was to get off the vent. Now it is to decanulate (get the traecheostomy out and go back to nose/mouth breathing) when next able. He said that after our discussion yesterday he thought about that too and asked a rehab RT to join her care team and work towards that goal. He also ordered her therapy restarted. He also ordered her into the cardiac chair twice a day, and out of her room while in it. He said that the RRT and his team were going to work closely with Sara and I to move in that direction and he figured it would not take long. Their only concern was the level of secretions she has. Then I poiinted out that cuffed traechs normally cause more irritation and trauma than uncuffed, and that increases secretions. They were surprised I knew that, but agreed and said they'd move towards an uncuffed when the felt it was indicated.
Then we ended the meeting and a few people came back to Sara's room with me to meet her and learn how to communicate with her. We showed them how to interpret her blinks, how to ask her questions and just how responsive she really is. Then we showed them how to use the communication board, even spelling out words. Then I told them what her signs of distress are and how to quickly figure out where the distress actually is. She was happy that more people were learning how to communicate with her. Then the RRT and I explained to her the plan of attack, to which she grinned widely (to his delight, too.) and blinked Yes.. I told him that she was letting us know that she's onboard. I asked her if she was just waiting for us to catch up with her, which she answered Yes, and he said out loud when she did.
He left and brought back two other RRTs on his team who will be working with her. He explained the goal and plan in front of her and everyone is onboard. I just watched her. Her eyes were so bright and alive. She was excited. Its so nice to see.
That was the first time since we left Kaiser Sacramento that I saw that kind of sparkle, that excitement of looking forward to something for herself. Somehow in that moment the darkness of the Rossmoor chapter faded away. Her journey is continuing, and she is ready for it.
Dr. Hospitalist started off by letting me know what her current condition is. He says she is over the pneumonia and medically stable. His only concern is the occasional low-grade fever and a borderline white cell count. Other than that, she shows nothing else that indicates any lingering illness. He said that her last lung sputum culture did not grow anything except colony bacteria. (colonization of bacteria in the lungs is not uncommon in ventilator-dependent patients - which she was for months.) She is clear of MRSA, Acinetobacter and other agressive, often fatal bacteria. He states that it is ok to start looking at her next level of care, although he does not wish to discharge her immediately.
Ms. Discharge Planner (this is a new on - not the one from Sacto) said she has made contact with 4 possible facilites that would likely accept her. I reminded her that my intent was to bring Sara home after Walnut Creek. Dr. Hospitalist said he would want to understand that I knew what that meant, and why I wanted to, but we'd come back to that. Ms. Discharge Planner continued and said that Rossmoor would accept her back and I nearly came out of my chair. I actually raised my voice and scared the hell out of the 6 other people in the room. "No Way is my daughter going back into that place. 7 days. 7 days is all it took for them to let her go from smiling, breathing easy, bright eyes, hopeful - to pneumonia, shutting down kidneys, borderline sepsis, respiratory distress, and scared for her life. And I was there, every day, fighting them to take care of her, coaching them on what she needed, and they ignored me STILL managed to almost kill her. No way. My daughter is NEVER going back into a facility like that. I promised her that. No Way. Period."
And then I gently apologized. I just couldn't do that to her, or let anybody make me do that to her, again. Not again.
Ms. Discharge Planner continued, stating that she understood that from our conversations, but that she felt it would be remiss on her part if she did not help support me bringing her home, and continue to look other options in case that became not possible for any reason. Ok, I said. I understand that. But Rossmoor will never be on that list... She said there was a place in San Leandro, Healdsburg, and some other place near walnut creek. I told her that we don't live down here, so all those are out. She's been away from home for almost 5 months and medically she is getting better and stronger, but psychosocially she needs to reconnect with her life, her friends, HER support group and community. I didn't like Healdsburg, but if we have to and it is close, we'll go there. I will send her the information for Evergreen in Petaluma, so she can check it out, too.
Ms. Home Care Coordinator popped in now and started going over the MediCAL realities, and stuff, programs. She didn't tell me anything I hadn't already found out, but I think she'll be a real good source for making easier contact with MediCAL program nurses. I like how straightforward she was.
Then they asked me why I was so intent on bring her home - not that there is anything wrong with that, but it will be hard. So I told them..
Rossmoor was a good facility. Everyone who said anything about it said it was good. I went there myself and there was no urine smell, patients weren't yelling for help, it was clean, staff looked happy and attentive to patients. But this good facility was the wrong facility for Sara. What happened to her care aside, it was the wrong environment. You know that nursing homes, skilled nursing facilities, whatever you want to call them, has a specific mission or function in the care cycle. They are there to maintain the body, at the same level, until the point of death. They are not there to help heal, or improve. They do not have the resources or focus to try and improve anybody's condition or outcome. If the body declines they have to send it to a higher level of care, if it gets better it goes home. But, on the whole, it is passive medicine. AND, if you have a patient, such as Sara, who is caught in the quagmire of a diagnosis/prognosis that doesn't afford even acute care any idea how to help her - well, skilled nursing has absolutely NO chance of helping her.
Sara, ON HER OWN, has challenged herself and everyone around her, to give her what she needs to improve. She understands completely that we are all in uncharted territory here. She is young, bright, and actually pretty happy. Dr. Hospitalist said he noticed that too. I said that everyone around her has seen her work to improve. The RTs see her do neck curls after coughing. She's working her own neck herself to try and improve. You stopped PT WITH her and she continues to do it without you. She looks to us, her loved ones, to help her where others will not. And we absolutely do and will continue. She smiles, open and closes her mouth, makes faces at the nurses, moves her head. Make no mistake. Those you look at and see social interaction. I look at that and see both social interaction and her working. I've peeked around the curtain where she couldn't see me, and seen her working her jaw and mouth. She even got her own mouth open, by slowly working it, after months of being in an aspen collar. She worked on her own swallow after I let her watch me do it a couple of times with my mouth partially open, so she could remember and mimic. Now she clears a lot of her own oral secretions.
And then I asked them..."Does this sound to you like somebody who needs to go to a place, where the focus and entire environment is there to maintain the body in its CURRENT state, until the point of death?"
And then they got it... Dr. Hospitalist actually shook my hand and told me he just learned something from me.
I said, listen, I know its going to be hard. But the alternative is clearly not acceptable and is not in HER best interest. She has committed to doing everything she can to get better and she trusts me, not just as her mother, but as the person who is now legally responsible to ensure her wishes are carried out. She trusts me to get her anything she needs. And she knows I will do it. I said I know if it were reversed that she would do the same, regardless.
So, that's why she's coming home. If she can't get rehab in the system, and the help to take herself further still, then we will build whatever is necessary, learn whatever is necessary, do whatever it takes to get it for her. And, at the same time, she will be surrounded by her family, friends, pets - in her own home with her own things on the walls - in the community she grew up in and that has supported her family so dearly since her accident. Its time. And it would be harder NOT to do it now, knowing that.
There was a long moment in the room - I could feel everyone taking it in for themselves. I know on the surface they are seeing a mother fighting for her child, but I know that each of them was internalizing bits and pieces of my argument.
And then I addressed Dr. Hospitalist. So, knowing that she has now worked her way off the ventilator and not getting any pulmonary rehab, what can we actually do to help her while she is still in this environment? Her goal on January 1st was to get off the vent. Now it is to decanulate (get the traecheostomy out and go back to nose/mouth breathing) when next able. He said that after our discussion yesterday he thought about that too and asked a rehab RT to join her care team and work towards that goal. He also ordered her therapy restarted. He also ordered her into the cardiac chair twice a day, and out of her room while in it. He said that the RRT and his team were going to work closely with Sara and I to move in that direction and he figured it would not take long. Their only concern was the level of secretions she has. Then I poiinted out that cuffed traechs normally cause more irritation and trauma than uncuffed, and that increases secretions. They were surprised I knew that, but agreed and said they'd move towards an uncuffed when the felt it was indicated.
Then we ended the meeting and a few people came back to Sara's room with me to meet her and learn how to communicate with her. We showed them how to interpret her blinks, how to ask her questions and just how responsive she really is. Then we showed them how to use the communication board, even spelling out words. Then I told them what her signs of distress are and how to quickly figure out where the distress actually is. She was happy that more people were learning how to communicate with her. Then the RRT and I explained to her the plan of attack, to which she grinned widely (to his delight, too.) and blinked Yes.. I told him that she was letting us know that she's onboard. I asked her if she was just waiting for us to catch up with her, which she answered Yes, and he said out loud when she did.
He left and brought back two other RRTs on his team who will be working with her. He explained the goal and plan in front of her and everyone is onboard. I just watched her. Her eyes were so bright and alive. She was excited. Its so nice to see.
That was the first time since we left Kaiser Sacramento that I saw that kind of sparkle, that excitement of looking forward to something for herself. Somehow in that moment the darkness of the Rossmoor chapter faded away. Her journey is continuing, and she is ready for it.
Thursday, March 13, 2008
Update/catchup - part 1
I peeked at the blog yesterday and realized that its not going to update itself. I don't know what I was thinking...
Monday was my birthday. Started off to be a pretty good day. I had gotten the call about getting the house on Saturday, the project at work had gone extremely well, and I walked in on Monday morning and nobody was cringing at the new database. I was going to go see my girl, and I was sure to at least get a call from my boyfriend.
Later in the morning I got a call from Dr. Physical Medicine and Rehab. I had been waiting for this call - when was Sara going to get to go to Vallejo Rehab. Well, she's not. Apparently, they decided after all that she is not a candidate for rehab, only for family care training. Wait, what? We discussed how far she's come, what she's doing, etc. Apparently that doesn't matter. They judge whether to commit resources to rehab based on their "expected" outcome and that is based on their diagnosis. So, someone looked up the code for Locked-In Syndrome (344.81 for anybody curious - I looked it up.) and pronounced her a lost cause. I don't remember most of the rest of the conversation but it went something like "very sorry", "supportive care", etc. Even writing it down makes my head go numb again.
About a half hour later I get a call from another discharge planner. I've had such good experiences with them...(grrr). She said she just talked to the doctor and understands that Sara is "not viable" and should just be transferred to long term care. This again. After some terse words with the woman regarding the use of "non viable" in description of my child we started dancing around the next step. Although Sara is not ready to move, they want to start the process of getting her placed somewhere. And then I did it...kind of lost it a little...told her to package her up I'm bringing her home. I was not going to have my daughter go to a nursing home again - wasn't going to let another place take a whack at killing her - everybody is dusting their hands off over her - we'll take our chances at home - if they don't believe in Sara they just don't know her, etc... The woman didn't speak very good english so I'm sure she didn't understand most of what I was saying. But, she did say she'd setup a discharge planning meeting with the doctor and the rest of the team for this Friday. We will plan the transition.
Ah, the doctor. I have been calling and leaving messages for him to call me all week. No response. I'm tempted to hunt him down in the hospital and shake him. But, anybody who doesn't want to work with me on her care, well, screw em'. He's rotation will be done on Friday and then he can dust his hands off..
The reason I've been trying to get ahold of him is related to some of the issue she's been having with the tube and secretions lately. Not getting any traction with getting ahold of anyone to actually DISCUSS her care with, I turned to my buddy, my pal, you know him from your computer, start of stage, film and the tabloids...it's the Internet. (all doctors cringe when families get digging on the internet...) Well, I did. In two days I have learned quite a bit of stuff on pulmonary rehab, tube weaning, secretion causes and remedies, the pulmonary toilet (look it up - not as nasty as it sounds...but its an actual term), emergency airways, different types of traech cannulas. I'm loaded up on information, have a plan, and a list of questions for whichever doctor whould like to entertain helping her through this stage. Well, it is Thursday now, and I STILL havent' heard from him. So, last night I talked to Sara about it and we're going to do it ourselves.
I talked to her about all the stuff I learned. Neck and lung anatomy, how it is supposed to work, what happens when you have a traecheostomy, why her secretions have increased, what the drugs she's on are able to do, and what they are not able to do. We talked about what is considered a standard approach to ventilator/pulmonary rehab, along with exercises, etc. We talked about incentive spirometry, but I don't know exactly how we can do that while she's still on the T. I did come up with an exercise for her when she has a little bit of mucus sound from her tube - blow slow and deep (since she growls) and push push push push every bit of air out to make the longest growl...then the biggest fast deep breath she can. I told her to do that a few times a day on her own and that will help a lot.
Monday was my birthday. Started off to be a pretty good day. I had gotten the call about getting the house on Saturday, the project at work had gone extremely well, and I walked in on Monday morning and nobody was cringing at the new database. I was going to go see my girl, and I was sure to at least get a call from my boyfriend.
Later in the morning I got a call from Dr. Physical Medicine and Rehab. I had been waiting for this call - when was Sara going to get to go to Vallejo Rehab. Well, she's not. Apparently, they decided after all that she is not a candidate for rehab, only for family care training. Wait, what? We discussed how far she's come, what she's doing, etc. Apparently that doesn't matter. They judge whether to commit resources to rehab based on their "expected" outcome and that is based on their diagnosis. So, someone looked up the code for Locked-In Syndrome (344.81 for anybody curious - I looked it up.) and pronounced her a lost cause. I don't remember most of the rest of the conversation but it went something like "very sorry", "supportive care", etc. Even writing it down makes my head go numb again.
About a half hour later I get a call from another discharge planner. I've had such good experiences with them...(grrr). She said she just talked to the doctor and understands that Sara is "not viable" and should just be transferred to long term care. This again. After some terse words with the woman regarding the use of "non viable" in description of my child we started dancing around the next step. Although Sara is not ready to move, they want to start the process of getting her placed somewhere. And then I did it...kind of lost it a little...told her to package her up I'm bringing her home. I was not going to have my daughter go to a nursing home again - wasn't going to let another place take a whack at killing her - everybody is dusting their hands off over her - we'll take our chances at home - if they don't believe in Sara they just don't know her, etc... The woman didn't speak very good english so I'm sure she didn't understand most of what I was saying. But, she did say she'd setup a discharge planning meeting with the doctor and the rest of the team for this Friday. We will plan the transition.
Ah, the doctor. I have been calling and leaving messages for him to call me all week. No response. I'm tempted to hunt him down in the hospital and shake him. But, anybody who doesn't want to work with me on her care, well, screw em'. He's rotation will be done on Friday and then he can dust his hands off..
The reason I've been trying to get ahold of him is related to some of the issue she's been having with the tube and secretions lately. Not getting any traction with getting ahold of anyone to actually DISCUSS her care with, I turned to my buddy, my pal, you know him from your computer, start of stage, film and the tabloids...it's the Internet. (all doctors cringe when families get digging on the internet...) Well, I did. In two days I have learned quite a bit of stuff on pulmonary rehab, tube weaning, secretion causes and remedies, the pulmonary toilet (look it up - not as nasty as it sounds...but its an actual term), emergency airways, different types of traech cannulas. I'm loaded up on information, have a plan, and a list of questions for whichever doctor whould like to entertain helping her through this stage. Well, it is Thursday now, and I STILL havent' heard from him. So, last night I talked to Sara about it and we're going to do it ourselves.
I talked to her about all the stuff I learned. Neck and lung anatomy, how it is supposed to work, what happens when you have a traecheostomy, why her secretions have increased, what the drugs she's on are able to do, and what they are not able to do. We talked about what is considered a standard approach to ventilator/pulmonary rehab, along with exercises, etc. We talked about incentive spirometry, but I don't know exactly how we can do that while she's still on the T. I did come up with an exercise for her when she has a little bit of mucus sound from her tube - blow slow and deep (since she growls) and push push push push every bit of air out to make the longest growl...then the biggest fast deep breath she can. I told her to do that a few times a day on her own and that will help a lot.
Monday, March 10, 2008
Shows
So, today Sara and I spent our time together watching shows on my Xbox again. Mostly MXC, which is a re-dubbing of a weird Japanese game show. The show is basically showcasing a bunch of people attempting to complete a very bizarre event course. Most of them don't succeed, and their failures are generally hilarious. So much of the day was spent laughing, which lead to coughing, which she does strongly. I don't know if she is doing this with anybody else, but she actually will admit to me when she needs suctioning now. The RT actually showed me how to do it and told me that if she needed it, I should do it, rather then wait for a nurse. The nurses didn't seem to mind either. Other then that, Sara was being very much herself. Which is both wonderful and slightly irritating (in the best possible way).
~Daniel H.
~Daniel H.
Sunday, March 9, 2008
Progress on all fronts...
I'm sitting here with a slight smile on my face. Slight only because I'm by myself at present. But I was sitting here, reflecting on the last two days, and some things are starting to look up.
First and foremose by far - Sara is fighting like hell. She coughs and pulls her head up off the pillow herself. Then, she starts doing neck curls. Moves her head up and down to the pillow until she can't any more. She is getting pretty good on the control and trying to keep it straight. Then, when she has some energy later, she is just rotating her head on the pillow side to side. Working those neck muscles.
Her dad told me that yesterday he noticed she was starting to bring her arms up to her chest, as well. After he said that I remembered her doing it the end of last week, but I was so focused on what she was doing with her head. He did say that her hands came all the way up, which they hadn't before.
She is also getting more tone into her arms and legs. When you move joints rapidly she resists it either way. When you hold her arm up over her head and drop it, it doesn't smack her in the head. (i wouldn't do it if it would...that would just be mean...) But she likes to see that she is getting some control.
Her face is doing much better. She is getting more control over her mouth, and has asked me to get her a mirror. She wants to be able to watch her face as she moves stuff. She is able to open and close her mouth. She opens her mouth a full two fingers high. She can bite my finger until she leaves marks. (and grins the whole time. the bite/no-bite game we used to play when she was a little girl.)
Second - we got a house. I have been sweating this for months and finally it fell into place. This house has two bedrooms and a bathroom downstairs, and two bedrooms and a bathroom upstairs. Family room, dining, and kitchen all open to each other and a fairly good sized living room that we can setup rehab equipment in. The backyard is huge and all tore up. The owner has said I can do pretty much anything to it (that improves it, I am sure.) It has a rickety deck off the back and I can easily redo that to accomodate Sara being outside in the sunshine and fresh air. There is a two car garage and washer dryer hookups, storage upstairs. It will work nicely and its only slightly more expensive than my current place. (Insult to injury - I just got a rent increase there...)
Well, that's all I have time to update right now. I'm at work, finishing up on a database project that has been 14 monhths in the preparation. I am so happy to finally be getting the database cleaned up and merged. Ok...back to work...
First and foremose by far - Sara is fighting like hell. She coughs and pulls her head up off the pillow herself. Then, she starts doing neck curls. Moves her head up and down to the pillow until she can't any more. She is getting pretty good on the control and trying to keep it straight. Then, when she has some energy later, she is just rotating her head on the pillow side to side. Working those neck muscles.
Her dad told me that yesterday he noticed she was starting to bring her arms up to her chest, as well. After he said that I remembered her doing it the end of last week, but I was so focused on what she was doing with her head. He did say that her hands came all the way up, which they hadn't before.
She is also getting more tone into her arms and legs. When you move joints rapidly she resists it either way. When you hold her arm up over her head and drop it, it doesn't smack her in the head. (i wouldn't do it if it would...that would just be mean...) But she likes to see that she is getting some control.
Her face is doing much better. She is getting more control over her mouth, and has asked me to get her a mirror. She wants to be able to watch her face as she moves stuff. She is able to open and close her mouth. She opens her mouth a full two fingers high. She can bite my finger until she leaves marks. (and grins the whole time. the bite/no-bite game we used to play when she was a little girl.)
Second - we got a house. I have been sweating this for months and finally it fell into place. This house has two bedrooms and a bathroom downstairs, and two bedrooms and a bathroom upstairs. Family room, dining, and kitchen all open to each other and a fairly good sized living room that we can setup rehab equipment in. The backyard is huge and all tore up. The owner has said I can do pretty much anything to it (that improves it, I am sure.) It has a rickety deck off the back and I can easily redo that to accomodate Sara being outside in the sunshine and fresh air. There is a two car garage and washer dryer hookups, storage upstairs. It will work nicely and its only slightly more expensive than my current place. (Insult to injury - I just got a rent increase there...)
Well, that's all I have time to update right now. I'm at work, finishing up on a database project that has been 14 monhths in the preparation. I am so happy to finally be getting the database cleaned up and merged. Ok...back to work...
Friday, March 7, 2008
Mel Brooks
I went up to see Sara today. With me, I brought my Xbox and most of my movies. I hooked up my Xbox and had Sara pick a movie out of my big binder. She choose "Robinhood, Men in Tights". We laughed at it of course. Afterwards we watched Invader Zim. Other then that the day was low key. It was wonderful seeing Sara without a Ventilator and breathing well.
The only problem today was when the lift team moved Sara it pulled on her foley which was causing her pain. When I told the nurse she was in pain the nurse acknowledged me and walked off to grab something. What she grabbed was Vicodin. She asked if Sara was in pain "Yes" Do you want some pain medication? "Yes". That is where I stoped the nurse. I asked her to re-adjust the foley and see how it felt before giving Sara the Vicodin. She did, and asked Sara if she was still in pain. "No". The nurse's response was something along the lines of "Oh, I guess she doesn't need it then." Ok, I understand that Sara might be in pain and need something to ease that beyond the Tylenol they give her. And If she actually needs it, I understand. But it worries me that instead of trying to figure out the source of the pain and trying addressing that first, they jump straight to heavy duty pain killers. Although that would get rid of the pain, it wouldn't fix the source of the pain, and the problem would remain after it wore off.
But other then that little thing, which I probably blew out of proportion, today was good.
The only problem today was when the lift team moved Sara it pulled on her foley which was causing her pain. When I told the nurse she was in pain the nurse acknowledged me and walked off to grab something. What she grabbed was Vicodin. She asked if Sara was in pain "Yes" Do you want some pain medication? "Yes". That is where I stoped the nurse. I asked her to re-adjust the foley and see how it felt before giving Sara the Vicodin. She did, and asked Sara if she was still in pain. "No". The nurse's response was something along the lines of "Oh, I guess she doesn't need it then." Ok, I understand that Sara might be in pain and need something to ease that beyond the Tylenol they give her. And If she actually needs it, I understand. But it worries me that instead of trying to figure out the source of the pain and trying addressing that first, they jump straight to heavy duty pain killers. Although that would get rid of the pain, it wouldn't fix the source of the pain, and the problem would remain after it wore off.
But other then that little thing, which I probably blew out of proportion, today was good.
Thursday, March 6, 2008
Mom is moving slow...
Apologies for delays in updates. I have been dragging tail for a few days and something had to give. So, my personal computer time (and the kitchen floor) took a back seat.
Sara is doing remarkably well. That kid is really something else. She is still doing very well without the ventilator, although she needs to start taking deeper breaths. I've been working with her to slow down her breathing and increase her volumes. She responds very well, but I can't be there the whole time to be her breathing coach.
I discussed her knee with Dr. Hospitalist. He told me that Dr. Orthopaedic Surgeon came by and looked at her knee. They did an xray and didn't see anything concerning. After physically working her knee they decided that the best thing would be to immobilize it and just let it rest. Her pain management will be the most key, as she really shouldn't have any narcotics. I talked to her Dr. Hospitalist about NOT using narcotics anymore, due to their affect on her neurologically. So, we are going back to Tylenol and Motrin. Nurses will just have to check her pain level more often, so it doesn't get out of hand.
We also discussed starting to get her up and into a wheelchair. Her head control is getting better and she needs to start getting upright for circulation and respiration. He said he'd write orders and get the PTs working towards that.
Dr. Physical Medicine and Rehab came in today to evaluate Sara. Apparently, Sara has improved to the point that they see some recovery as viable. She may be a good candidate for intensive rehab in the Kaiser Vallejo Rehabilitation Center. It is a Center of Excellence and widely recognized as one of the best stroke rehabilitation centers on the west coast. I should find out in the next few days if she will be accepted. She lit up when he said that, as that is her next major goal. We kept assuming that she would not be able to go to rehab anytime soon (based on what her Neurologist had said at Kaiser Sacramento.) Anyway, waiting to find out.
He also talked to Sara and I. He found out a bunch of stuff about her, and her goals (surgeon, etc.) and had a nice conversation with her. He is very encouraging. He told her that no matter what some doctors may say to her, he has read about more recovery cases of locked-in syndrome than the other way around. Now, that may because nobody writes about the ones relegated to home/bed/less... BUT, he did echo what I had already told her - youth is her biggest asset. He said what she has been able to accomplish so far is nothing short of remarkable in itself. He also commented to me that her face is so emotive. He is right. She is able to move all parts of her face and does so as she did before, albeit more slowly.
She wants me to rig up a mirror so she can watch her face as she tries to work on her mouth movements. She is swallowing very well, but her lip movements are delayed, so she still secretes some drool bubbles. Its starting to get to her and she's ready to stop having her mouth wiped by everyone.
We hung out last night, talking about the house hunt, and I chased her itches. I did make her use her communication computer to actually TELL me where it itched. I know it would be easier for her for me to try and pull it out of her with questions, but it is time that she work to initiate communications and push for her own needs and desires. She has the tools and the ability. Now she just needs the practice.
I got a broadband connection card for the computer yesterday. She knows that once she gets a little faster on it that she will be able to browse, email, and chat with friends. It is exciting, because that is her primary method of communicating with her circle of friends when not face to face. I'm sure they can't wait to hear from her either. Her wit is sharp, her intellect intact, and she hasn't spoken in over 4 months. She'll have a few things to say. I know my own heart will jump when I see her online for the first time.
I'm sure nobody is looking more forward to it than she is...
Onward and upward Baby Girl. I'm so glad you are here...
Sara is doing remarkably well. That kid is really something else. She is still doing very well without the ventilator, although she needs to start taking deeper breaths. I've been working with her to slow down her breathing and increase her volumes. She responds very well, but I can't be there the whole time to be her breathing coach.
I discussed her knee with Dr. Hospitalist. He told me that Dr. Orthopaedic Surgeon came by and looked at her knee. They did an xray and didn't see anything concerning. After physically working her knee they decided that the best thing would be to immobilize it and just let it rest. Her pain management will be the most key, as she really shouldn't have any narcotics. I talked to her Dr. Hospitalist about NOT using narcotics anymore, due to their affect on her neurologically. So, we are going back to Tylenol and Motrin. Nurses will just have to check her pain level more often, so it doesn't get out of hand.
We also discussed starting to get her up and into a wheelchair. Her head control is getting better and she needs to start getting upright for circulation and respiration. He said he'd write orders and get the PTs working towards that.
Dr. Physical Medicine and Rehab came in today to evaluate Sara. Apparently, Sara has improved to the point that they see some recovery as viable. She may be a good candidate for intensive rehab in the Kaiser Vallejo Rehabilitation Center. It is a Center of Excellence and widely recognized as one of the best stroke rehabilitation centers on the west coast. I should find out in the next few days if she will be accepted. She lit up when he said that, as that is her next major goal. We kept assuming that she would not be able to go to rehab anytime soon (based on what her Neurologist had said at Kaiser Sacramento.) Anyway, waiting to find out.
He also talked to Sara and I. He found out a bunch of stuff about her, and her goals (surgeon, etc.) and had a nice conversation with her. He is very encouraging. He told her that no matter what some doctors may say to her, he has read about more recovery cases of locked-in syndrome than the other way around. Now, that may because nobody writes about the ones relegated to home/bed/less... BUT, he did echo what I had already told her - youth is her biggest asset. He said what she has been able to accomplish so far is nothing short of remarkable in itself. He also commented to me that her face is so emotive. He is right. She is able to move all parts of her face and does so as she did before, albeit more slowly.
She wants me to rig up a mirror so she can watch her face as she tries to work on her mouth movements. She is swallowing very well, but her lip movements are delayed, so she still secretes some drool bubbles. Its starting to get to her and she's ready to stop having her mouth wiped by everyone.
We hung out last night, talking about the house hunt, and I chased her itches. I did make her use her communication computer to actually TELL me where it itched. I know it would be easier for her for me to try and pull it out of her with questions, but it is time that she work to initiate communications and push for her own needs and desires. She has the tools and the ability. Now she just needs the practice.
I got a broadband connection card for the computer yesterday. She knows that once she gets a little faster on it that she will be able to browse, email, and chat with friends. It is exciting, because that is her primary method of communicating with her circle of friends when not face to face. I'm sure they can't wait to hear from her either. Her wit is sharp, her intellect intact, and she hasn't spoken in over 4 months. She'll have a few things to say. I know my own heart will jump when I see her online for the first time.
I'm sure nobody is looking more forward to it than she is...
Onward and upward Baby Girl. I'm so glad you are here...
Tuesday, March 4, 2008
Doing so well she's been transferred out of ICU..
Yep, I could hardly believe it yesterday myself. She is doing so well off the ventilator, and they have her pneumonia under control. Her kidneys are working fine now. They did an MRI of her knee yesterday. I'll find out today if they will have to do surgery to fix the damage done by the Rossmoor lift team..
But, she was in real good spirits. She was back to smiling a lot, playing tricks on me, having me chase all over her body for an itch. I noticed she was moving her head more, which she acknowledged as purposeful. Awesome!
I set up her communication computer. She's been too weak to use it, so I had it with me for safe keeping with all the transistions. When the Kaiser Liaison came to Rossmoor to meet me she was only concerned with where the computer was. I couldn't believe it. I'm standing there, wiping my daughter down trying to find out where she hurt (that was the day her sternum hurt and chest hurt) and she was most concerned with the location of the computer. People sometimes really crack me up...
I talked to a guy about a house yesterday. I go see it today. It would be a good place to bring her home to. I'm excited about the possibilities. I will be taking Michael with me to look at it this afternoon. Then, back off the the hospital to see whatelse the kid is up to.
I did get a kick out of calling her Neurologist and telling him that Sara was off the vent. He said she never would be. I just wanted to let him know that no matter what the brain CT scan looks like, or how bad you think a lesion is, that you can never truly know what a person is capable of. Sara always hated it when he'd say she'd never be off right in front of her. She'd sometimes grind her teeth in protest. I'm glad she proved him wrong. More importantly...I'm glad she proved herself right...
Go Kitten!
But, she was in real good spirits. She was back to smiling a lot, playing tricks on me, having me chase all over her body for an itch. I noticed she was moving her head more, which she acknowledged as purposeful. Awesome!
I set up her communication computer. She's been too weak to use it, so I had it with me for safe keeping with all the transistions. When the Kaiser Liaison came to Rossmoor to meet me she was only concerned with where the computer was. I couldn't believe it. I'm standing there, wiping my daughter down trying to find out where she hurt (that was the day her sternum hurt and chest hurt) and she was most concerned with the location of the computer. People sometimes really crack me up...
I talked to a guy about a house yesterday. I go see it today. It would be a good place to bring her home to. I'm excited about the possibilities. I will be taking Michael with me to look at it this afternoon. Then, back off the the hospital to see whatelse the kid is up to.
I did get a kick out of calling her Neurologist and telling him that Sara was off the vent. He said she never would be. I just wanted to let him know that no matter what the brain CT scan looks like, or how bad you think a lesion is, that you can never truly know what a person is capable of. Sara always hated it when he'd say she'd never be off right in front of her. She'd sometimes grind her teeth in protest. I'm glad she proved him wrong. More importantly...I'm glad she proved herself right...
Go Kitten!
Monday, March 3, 2008
Amazing kid
Sara truly knocks my socks off. She comes back from the brink of sepsis, with kidneys shutting down and digestion shut down, all the way to off the ventilator.
NOW she is off the ventilator even at night. They kept her off last night and she did just fine. No apnea. No issues.
I have always believed in her, but i'm still a little dumbfounded at how she could come back so far so fast - and all the way to her primary goal for this year. We initially set it as a 6 month goal (on Jan 1) to be off the vent, and she did it in 90 days.
I can't wait to see what she'll do in the next 90 days...
NOW she is off the ventilator even at night. They kept her off last night and she did just fine. No apnea. No issues.
I have always believed in her, but i'm still a little dumbfounded at how she could come back so far so fast - and all the way to her primary goal for this year. We initially set it as a 6 month goal (on Jan 1) to be off the vent, and she did it in 90 days.
I can't wait to see what she'll do in the next 90 days...
Sunday, March 2, 2008
improving
Sara is on Day 2 of being off the ventalator. She was breathing well, and not coughing quite as often as she was. Mainly just when they shift her position. Her left leg was still in some pain. Kristina confirmed with sara the nature of her knee injury. While at rosmoore, they put her in the lift sling (which doesn't work well for Sara at all) and set her down with her leg folded underneath her. Putting her full body weight on legs that arnt quite that flexible anymore due to 4 months of inactivity. It is likley that sara pulled some things in her knee. I think they were gonna do an MRI to check.
I spent today watching vampire movies with Sara on the TV. This place has a much better channel selection. I think we were watching TMC or something. We watched "Blade II" and "Van Hellsing" It was low key, which was good.
Kristina and Michael stopped by to see Sara a bit latter in the day. They hadn't seen her breathing off the ventalator yet. I left before they did, so they had her to themselves for the last part of the day.
I spent today watching vampire movies with Sara on the TV. This place has a much better channel selection. I think we were watching TMC or something. We watched "Blade II" and "Van Hellsing" It was low key, which was good.
Kristina and Michael stopped by to see Sara a bit latter in the day. They hadn't seen her breathing off the ventalator yet. I left before they did, so they had her to themselves for the last part of the day.
Saturday, March 1, 2008
What a difference a day makes
Just so everyone knows her current condition from Kristina’s last post. Her temperature is down, she is no longer coughing up blood into her vent tube, and she is communicating with eyes wonderfully, and finally the color is back in her face.
I made the drive out to see Sara; I had talked to Kristina last night and got the latest info on her. I was not a happy camper. I expected to see her in real bad shape. Well I found her room and walked in and the Girl was pink again. Her skin color looked so much better than it was last weekend when I saw her. Her Breathing was great and she wasn’t covered in sweat. The best part was the big smile I got from her when she saw me walk in the room. It took me a minute to understand, but the ventilator was turned off. I looked at it like a monkey looking at a road map for I guess about a minute. I understood it was off, but wasn’t getting it at first. Then I talked to the nurse about it. She explained that Sara is on 35% oxygen and that she is off the ventilator. I was completely shocked. This girl has had a machine helping her move air now for 5 months and then to see her breathing just fine on her own. I didn’t believe it at first. They explained that she had been taken off the vent at 10 that morning and she had been breathing on her own for 3 hours now. I watched her real close for the first 30 minutes I was there. Her breathing was smooth and easy. It was a huge difference from last week when she was struggling so hard. They will be putting her backon the vent tonight, but plan on taking it her off again in the morning. They want it on her tonight just to be safe.
Well we hung out and talked for a while then settled down to our Saturday afternoon bit of watching a movie on my laptop. She picked the 5th element. She has seen that movie so many times it not even funny. The DVD has cracks on the center circle from being played so much. While she was watching the movie, I got a hold of Kristina and brought her up to date. She was just as shocked as I was. It was a great relief for her to hear that Sara was doing much better. Kristina has had a hard week and she needed some good news.
Sara was complaining about her leg. I would move it to a more comfortable position and she would feel better for about 10 or 15 minutes. After that she indicated that it would hurt again and I would find another position that felt better. The pain is centered on her knee. There is a yellow mark just below her kneecap and swelling just above it. I talked with the nurse about it, and we think it might be from one of the many moves she has had in the last few days. If that leg has hanging over when they moved her, it could have done something to it. The doctor is going to have a look at it in the morning. For tonight the nurse will work with her on pain management. I Asked Sara how bad the pain was and she stopped me at 4. So it’s not too bad. I think it just bugs her she can’t move it herself when it gets tender.
We finished our movie and Sara was getting tired.Tracy had been there that morning and I was there for the rest of the day. I left her at 7 so she could get some rest. We can all take a deep breath now that she is stable and doing much better. I called Kristina when I left the hospital and give her all the details. It really raised her spirits. Daniel and Kristina will be seeing her tomorrow. She can see for herself how awesome Sara is doing.
Mike
I made the drive out to see Sara; I had talked to Kristina last night and got the latest info on her. I was not a happy camper. I expected to see her in real bad shape. Well I found her room and walked in and the Girl was pink again. Her skin color looked so much better than it was last weekend when I saw her. Her Breathing was great and she wasn’t covered in sweat. The best part was the big smile I got from her when she saw me walk in the room. It took me a minute to understand, but the ventilator was turned off. I looked at it like a monkey looking at a road map for I guess about a minute. I understood it was off, but wasn’t getting it at first. Then I talked to the nurse about it. She explained that Sara is on 35% oxygen and that she is off the ventilator. I was completely shocked. This girl has had a machine helping her move air now for 5 months and then to see her breathing just fine on her own. I didn’t believe it at first. They explained that she had been taken off the vent at 10 that morning and she had been breathing on her own for 3 hours now. I watched her real close for the first 30 minutes I was there. Her breathing was smooth and easy. It was a huge difference from last week when she was struggling so hard. They will be putting her backon the vent tonight, but plan on taking it her off again in the morning. They want it on her tonight just to be safe.
Well we hung out and talked for a while then settled down to our Saturday afternoon bit of watching a movie on my laptop. She picked the 5th element. She has seen that movie so many times it not even funny. The DVD has cracks on the center circle from being played so much. While she was watching the movie, I got a hold of Kristina and brought her up to date. She was just as shocked as I was. It was a great relief for her to hear that Sara was doing much better. Kristina has had a hard week and she needed some good news.
Sara was complaining about her leg. I would move it to a more comfortable position and she would feel better for about 10 or 15 minutes. After that she indicated that it would hurt again and I would find another position that felt better. The pain is centered on her knee. There is a yellow mark just below her kneecap and swelling just above it. I talked with the nurse about it, and we think it might be from one of the many moves she has had in the last few days. If that leg has hanging over when they moved her, it could have done something to it. The doctor is going to have a look at it in the morning. For tonight the nurse will work with her on pain management. I Asked Sara how bad the pain was and she stopped me at 4. So it’s not too bad. I think it just bugs her she can’t move it herself when it gets tender.
We finished our movie and Sara was getting tired.Tracy had been there that morning and I was there for the rest of the day. I left her at 7 so she could get some rest. We can all take a deep breath now that she is stable and doing much better. I called Kristina when I left the hospital and give her all the details. It really raised her spirits. Daniel and Kristina will be seeing her tomorrow. She can see for herself how awesome Sara is doing.
Mike
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