First...if my update wanders please forgive. I have been up for the last two days and I am coming off adrenaline surge from the days events.
She is currently in the ICU at Kaiser Walnut Creek. She is a very sick little girl, but they still haven't isolated exactly why. They know she is battling some infection, but have yet to isolate it. Because of her rapid decline over the past week, and her condition upon admit to the ER, they got aggressive and have thrown 5 different IV antibiotics at it. Kaiser is known for their judicious use of antibiotics and the benefits of that approach. It is also apparent that they will go above and beyond that approach when the patient warrants. Well, Sara warranted.
When we arrived at the ER she was weak, laboring to breath even with the ventilator doing the work for her, not coughing much and when she did coughed up bloody junk, she was sweating profusely, temp spiking 102+, heartrate was very high (140), was starting to rash, had dark orange urine, and could not control her eyes.
She relies on her eyes as her only form of communication - manual or electronic. Several times over the last two days she has either gotten too weak to try and blink and follow, or has had instances of uncontrolled blinking where she just keeps on going. I was able to figure this out after getting very frustrated that she wouldn't "shut up" the blinking and actually answer a question. She couldn't. And she couldn't use the letterboard. That was hard because suddenly our only means of communication was gone, and she needed to tell me where it hurt, what felt bad, how long, etc. She was scared, because that was not working for us, so i had to tell her that I didn't need her to tell us - we'd figure it out.
They assessed her and got the history of this illness from me. They were surprised at her condition rolling in and even more so when they started getting the rest of the picture. They started taking a flurry of labs and samples, started changing out dressings and looking at every opening on her. They took a chest x-ray and listened to her lungs at length. they were very interested at the condition of her traech when they noticed her bleeding from it when she coughed.
I met with the doctor and he told me of his first assessment. She has pneumonia of some sort, but not as major as she appears on the surface. His concern is that what he saw there wouldn't cause her to be as sick as she clearly was. So he was going to start treating the most likely culprits and load her up with fluid. He was surprised that they had not been running more into her before she had to come over (me, too. I requested they get an order for IV fluids on at least three occasions...) He assured me that they would find out what was making her so sick, and in the interim they would get her stable again. He told me that he was going to have the Hospitalist come see Sara as well.
The whole time she had 2-3 nurses and an RT orbiting around her, drawing labs, wiping sweat, clarifying history, giving her treatments, and reassuring her and I both that its ok.
Sara was so weak and exhausted that she drifted in and out of sleep. I am sure there were a few times it wasn't sleep at all. But she'd open her beautiful blue eyes just a peep to make sure I was there. I was...doing my navy pacing. My pacing is done as if I were marching...
After what felt like an eternity they finally had a bed available upstairs in the ICU. We moved up there and her nurse and RT started trading places at her bedside. And a whole other volley of lab tests had to be drawn and run. Meanwhile, they threw three other antibiotics up on the pole and ran them into her...along with a whole bunch of fluid.
By the time late afternoon rolled around, she would crack the occasional smile, was coughing more and we had been able to communicate clearly a few times. She had a great deal of pain in one of her legs, and they gave her vicodin for it, which looped her out a bit, too. She was still spiking temperatures and sweating profusely, but doing much better on the vent.
By the time Daniel arrived she mustered the biggest smile i've seen in days.
Friday, February 29, 2008
Transferred out of Rossmoor
Sara is no longer at Rossmoor. She was sent via ambulance to the Kaiser Walnut Creek ER. That is currently where we are. She is in serious condition .
It is amazing what a difference a week can make in her condition. She left Kaiser Sacramento in good health and spirits. Now she is laying on a gurney in front of me very ill and struggling.
I talked to Tracy on my way to Rossmoor. I told him what has been going on and my concerns. He jumped in the car and came to see for his self. I won't speak for him, but his thoughts on her condition, level of care, and assessment of her decline seemed similar to my own.
After discussing Sara's condition with the charge nurse and her with the MD, the decision was made that they just needed to transport her. They wanted John Muir, but we have to go to Kaiser. that's fine.
I just talked to the Hospitalist and she will be admitted to an ICU. We just have to wait and see where...
It is amazing what a difference a week can make in her condition. She left Kaiser Sacramento in good health and spirits. Now she is laying on a gurney in front of me very ill and struggling.
I talked to Tracy on my way to Rossmoor. I told him what has been going on and my concerns. He jumped in the car and came to see for his self. I won't speak for him, but his thoughts on her condition, level of care, and assessment of her decline seemed similar to my own.
After discussing Sara's condition with the charge nurse and her with the MD, the decision was made that they just needed to transport her. They wanted John Muir, but we have to go to Kaiser. that's fine.
I just talked to the Hospitalist and she will be admitted to an ICU. We just have to wait and see where...
Tuesday, February 26, 2008
End of the day update...
Sara is doing pretty well this evening. I just called and checked on her. The charge nurse said they put her on A/C for the night (assist control), her O2 sats and volumes are fine, but she is running a fever of 101. They've given her tylenol and are watching it. They said she is sleeping right now.
Daniel went to hang out with her today. Her dear friend Tim went too. I don't know the specifics of their visit, but I am sure there was plenty of laughter.
Daniel did call me a couple of times during and after the visit to update me on her condition. I felt better having another set of eyes on her today. Apparently they had put her back on SPON this morning, but only set her pressure support for 5, instead of the 10 it is supposed to be. She tolerated it fairly well for about 4 hours, then fatigued. They apparently caught it then, and put her up to 15 support to compensate. She apparently did not de-sat during that time, just got tired. There is a bit much monkeying with the ventilator if we come up with an "oops...that should have been set at..." Anyway, she was doing well as he left.
I'll be seeing her tomorrow.
Right now, her cat is at the end of my bed. He's doing a little cat snore he does. Too funny. He's so old..and she loves him so much. He's like an old stuffed animal, with one eye all messed up, and the covering rubbed off of a couple of places, that smells bad but you can't wash it or it will fall apart. She has a stuffed duck like that. Called Ducky. it is actually a platipus, but looks like a ducky. I don't know how long it took Tracy and I to figure out it wasn't actually a duck...
I'm rambling memories, so I must be tired. She sleeps, so I sleep. Adeiu
Daniel went to hang out with her today. Her dear friend Tim went too. I don't know the specifics of their visit, but I am sure there was plenty of laughter.
Daniel did call me a couple of times during and after the visit to update me on her condition. I felt better having another set of eyes on her today. Apparently they had put her back on SPON this morning, but only set her pressure support for 5, instead of the 10 it is supposed to be. She tolerated it fairly well for about 4 hours, then fatigued. They apparently caught it then, and put her up to 15 support to compensate. She apparently did not de-sat during that time, just got tired. There is a bit much monkeying with the ventilator if we come up with an "oops...that should have been set at..." Anyway, she was doing well as he left.
I'll be seeing her tomorrow.
Right now, her cat is at the end of my bed. He's doing a little cat snore he does. Too funny. He's so old..and she loves him so much. He's like an old stuffed animal, with one eye all messed up, and the covering rubbed off of a couple of places, that smells bad but you can't wash it or it will fall apart. She has a stuffed duck like that. Called Ducky. it is actually a platipus, but looks like a ducky. I don't know how long it took Tracy and I to figure out it wasn't actually a duck...
I'm rambling memories, so I must be tired. She sleeps, so I sleep. Adeiu
Update - 2/26
Sara is not doing so well since moving. The pneumonia sprung up on her so fast at the worst possible time - when trying to get settled into a new place. First tired from the move, then having to adjust to new caregivers, and now working just to breathe.
I was with her yesterday. She was working harder than i've seen her try to breathe in a very long time. I'm trying to get some relief, resolution and was finding none. After hours of watching her work so hard I was just at my wits end. I would talk to the nurses and get as far as they could easily give me. I would talk to her respiratory therapist and get as far as they could give me. And they would walk off satisfied that they had adequately addressed my concern. And then I would look down at her and she'd still be working so hard, breathing so fast with such a small volume, and I'd just cry. I was standing there at her bedside, actually fearing that if I didn't get something for her that this could be the beginning of her end. I was that scared.
I finally started flipping through numbers in my phone and calling anybody who could help me. I called the boss of discharge planning at Kaiser (on her cell at home) to see if she could tell me the name of the Kaiser doctor assigned to Sara. That assignment was one of the reason that they held her discharge a day, so I know they have it somewhere, but the staff here can't find it. LL didn't have it at home, and then I felt silly to have called her. I had no concept of time at that point. She'd call me Tuesday.
So I went back to wiping her down, chasing itches, and making sure her cat was up against her leg. Oh, yeah, I took the cat there yesterday. It thrilled Sara and made the cat pretty happy too. He still wouldn't willingly come out of the cat carrier, but he did hang a paw over her leg and sit there and purr. He even tucked his nose up under his paw and the edge of her leg and napped.
Even with that calming influence on her, she was still taking 40+ breaths a minute with a very shallow volume (mid 200s). I finallly, in desparation, called the local Kaiser hospital trying to track down a doctor. Hey, no joy. They thought I was just some nut calling from a nursing home trying to spoof them that my 19 year old daughter was in respiratory distress. So, I called up to the ICU in Sacramento. I at least know the staff up there and they would tell me if I was truly being a nut. I talked to one of the nurses I trust most and she gave me some advice, but also said that I needed to find a doctor there to lay eyes on her.
After getting off the phone the RT came in and I asked if there was anything we could do to get her volume up - suction, change the HME, anything... She said they could give her albuterol and atrovent. I told her that she's supposed to be getting that every 4 hours, so when was the last time she got it? She hadn't at all since she left Kaiser, we found out. My own head went a little numb. Ok, so they gave her a Duoneb treatment to try and open her up a bit. Sara indicated that it helped a bit. She was still laboring with still lower than usual volumes (low 300s). So I asked the RT what she had ordered for breaking up stuff in her lungs - Rubinol. (I thought that was to keep down her oral secretions...I have to check...) And for combating the pneumonia - IV antibiotics. The culture is not back yet, so we don't know what specifically we are combatting.
Ok...is there ANYTHING else we can do for her to ease her breathing, get her volume up, etc. Position? More IV fluids (her urine is turning kind of orange...)? Manual therapy?
We changed her position anyway, it was time. Talked to the nurse about fluids - she said No. Manual therapy - no orders - so I did it myself. We discussed what they had available that they could order and the RT will talk to the doctor (dr who?)
The only other thing was to put her on a rate. Sara immediately started indicating No. She does not want to have the vent to all the work for her. She doesn't want to be dependent - she wants off the vent. So we talked about it with the RT. The doctor has orders in to put her on A/C if she needs it. The RT told Sara that she wanted to give her a rest and get the volumes back up, so she could put her on a rate at night and then SPON (spontaneous) during the day - just while she gets over the pneumonia. Sara still said No. So I trumped her. I asked her if she wanted to get better or was she wanting to give up. She indicated to get better. So I told her that I would trump her secondary desire in the interest of that primary goal.
The RT put her on A/C and within a few minutes she was more at ease and resting. I asked her if that felt like it made a big difference and she said Yes. I told her that THIS was how she was SUPPOSED to breathe and if she was breathing like before that it is a problem that needs to be addressed. I know she wants off the ventilator. I know she hates suctioning. But she also knows that they are both a fact of life right now and we need to use the tools for her as best we can.
I stayed for a couple of more hours, just so ease myself by then. She and I were holding hands and watching "A Raisin in the Sun". Her cat happily against her leg, napping like cats do. By the time I left I was mentally baked. I am sure I could go to school and become a critical care nurse - but taking care of my own kid would be the worst. Every time I looked at her face I would see my baby girl - just like I do now. I just want to be her Mom, and take care of her like a Mom can. I just want to bring her home and protect her like I should.
I called last night and all they would tell me is that her vitals were stable. I asked more (last pulse ox, was she sleeping), but the person I spoke to couldn't be bothered with checking her...
I'm back at work today (Finally!!)
Daniel will be up with Sara today. He's going to call me when he gets there so I can get some info on how she is really doing this morning.
I was with her yesterday. She was working harder than i've seen her try to breathe in a very long time. I'm trying to get some relief, resolution and was finding none. After hours of watching her work so hard I was just at my wits end. I would talk to the nurses and get as far as they could easily give me. I would talk to her respiratory therapist and get as far as they could give me. And they would walk off satisfied that they had adequately addressed my concern. And then I would look down at her and she'd still be working so hard, breathing so fast with such a small volume, and I'd just cry. I was standing there at her bedside, actually fearing that if I didn't get something for her that this could be the beginning of her end. I was that scared.
I finally started flipping through numbers in my phone and calling anybody who could help me. I called the boss of discharge planning at Kaiser (on her cell at home) to see if she could tell me the name of the Kaiser doctor assigned to Sara. That assignment was one of the reason that they held her discharge a day, so I know they have it somewhere, but the staff here can't find it. LL didn't have it at home, and then I felt silly to have called her. I had no concept of time at that point. She'd call me Tuesday.
So I went back to wiping her down, chasing itches, and making sure her cat was up against her leg. Oh, yeah, I took the cat there yesterday. It thrilled Sara and made the cat pretty happy too. He still wouldn't willingly come out of the cat carrier, but he did hang a paw over her leg and sit there and purr. He even tucked his nose up under his paw and the edge of her leg and napped.
Even with that calming influence on her, she was still taking 40+ breaths a minute with a very shallow volume (mid 200s). I finallly, in desparation, called the local Kaiser hospital trying to track down a doctor. Hey, no joy. They thought I was just some nut calling from a nursing home trying to spoof them that my 19 year old daughter was in respiratory distress. So, I called up to the ICU in Sacramento. I at least know the staff up there and they would tell me if I was truly being a nut. I talked to one of the nurses I trust most and she gave me some advice, but also said that I needed to find a doctor there to lay eyes on her.
After getting off the phone the RT came in and I asked if there was anything we could do to get her volume up - suction, change the HME, anything... She said they could give her albuterol and atrovent. I told her that she's supposed to be getting that every 4 hours, so when was the last time she got it? She hadn't at all since she left Kaiser, we found out. My own head went a little numb. Ok, so they gave her a Duoneb treatment to try and open her up a bit. Sara indicated that it helped a bit. She was still laboring with still lower than usual volumes (low 300s). So I asked the RT what she had ordered for breaking up stuff in her lungs - Rubinol. (I thought that was to keep down her oral secretions...I have to check...) And for combating the pneumonia - IV antibiotics. The culture is not back yet, so we don't know what specifically we are combatting.
Ok...is there ANYTHING else we can do for her to ease her breathing, get her volume up, etc. Position? More IV fluids (her urine is turning kind of orange...)? Manual therapy?
We changed her position anyway, it was time. Talked to the nurse about fluids - she said No. Manual therapy - no orders - so I did it myself. We discussed what they had available that they could order and the RT will talk to the doctor (dr who?)
The only other thing was to put her on a rate. Sara immediately started indicating No. She does not want to have the vent to all the work for her. She doesn't want to be dependent - she wants off the vent. So we talked about it with the RT. The doctor has orders in to put her on A/C if she needs it. The RT told Sara that she wanted to give her a rest and get the volumes back up, so she could put her on a rate at night and then SPON (spontaneous) during the day - just while she gets over the pneumonia. Sara still said No. So I trumped her. I asked her if she wanted to get better or was she wanting to give up. She indicated to get better. So I told her that I would trump her secondary desire in the interest of that primary goal.
The RT put her on A/C and within a few minutes she was more at ease and resting. I asked her if that felt like it made a big difference and she said Yes. I told her that THIS was how she was SUPPOSED to breathe and if she was breathing like before that it is a problem that needs to be addressed. I know she wants off the ventilator. I know she hates suctioning. But she also knows that they are both a fact of life right now and we need to use the tools for her as best we can.
I stayed for a couple of more hours, just so ease myself by then. She and I were holding hands and watching "A Raisin in the Sun". Her cat happily against her leg, napping like cats do. By the time I left I was mentally baked. I am sure I could go to school and become a critical care nurse - but taking care of my own kid would be the worst. Every time I looked at her face I would see my baby girl - just like I do now. I just want to be her Mom, and take care of her like a Mom can. I just want to bring her home and protect her like I should.
I called last night and all they would tell me is that her vitals were stable. I asked more (last pulse ox, was she sleeping), but the person I spoke to couldn't be bothered with checking her...
I'm back at work today (Finally!!)
Daniel will be up with Sara today. He's going to call me when he gets there so I can get some info on how she is really doing this morning.
Sunday, February 24, 2008
The girl IS sick...
She has pneumonia. Results of the chest x-ray yesterday showed it in the right lower lung. They started her on antibiotics lastnight. The RTs have been watching her closer and encouraging cough and suctioning.
When I went there today I found out that they won't be doing any therapies because the doctor didn't order any yet. I talked to her RT and asked if it would be ok if I did some percussive therapy myself - and showed her what I had been taught. She said that would be great and certainly would help Sara.
I lowered her bed to the floor, but kept her head up better than 30 degrees. I crawled onto the bed and put her legs over mine. I leaned forward and scooped up under her arms, supported her head, and rolled back until she was on my lap in a big hug. After I checked to make sure she was ok, I started patting her back with a cupped hand, all up and down the right lung. For good meansure, I did it up and down the left lung also, then returned to the right lung. I then just held her up against me. It was so nice just to be able to hold her, even if it probably looked really strange to anyone looking. She's still my baby girl. I gently rolled forward until she was against the bed and settled. She got a good cough going and I saw some junk appear in her tubing.
I stayed there and flexed her joints and checked the tone of her muscles. She has improved slightly in a few places. And when I noticed she had some resistance to my movements on the left arm I asked her if she could resist me, and she said yes. I told her to keep me from moving her arm. While she certainly isn't strong enough to actually do so, I did feel resistance to my movements. I told her that even that is good exercise.
I gently worked her arms and shoulders. She said that working her shoulders hurt some, and I suspect it is because she hasn't had much work there. They were very ginger with the arm with the PICC, and rarely touched the other arm, as it had a BP cuff on. After slowly working her shoulders I was able to get her arms out to her sides comfortably, and then gently above her head. I told her to notice how open her lungs feel when her arms change position, which she acknowledged. I asked her to work on taking bigger breaths when I work her arms, and she indicated she would try.
I did another bear hug and thumped her back and then her right side. When I rolled her back we were able to get her to balance her head on her neck. She does have very slight muscle control, but is very weak. I then gently held her head and asked her to move it any direction she could - which she did ever slightly. I told her that even a little movement and resistance is worth building upon. And then I released her head and let her roll back onto the pillow. I asked her if she had accomplished something and she smiled. I told her that this is what it is going to be like from here in...small movements...and working those movements and control for just a little more each time. I would rely upon her to tell me what she could make listen to her.
I left her watching the Oscars. I had to go pick up her brother and come home. I'll see her tomorrow.
I did just call in and check on her. The nursing staff is getting used to me calling in to check. The Kaiser staff was always great about it, too. They knew I would call at least once a night, before I went to sleep, so I could. The charge nurse told me that she was her patient and was doing well. She had spent some time in there talking to Sara and working on communication. She told me that Sara was resting now for the night.
When I went there today I found out that they won't be doing any therapies because the doctor didn't order any yet. I talked to her RT and asked if it would be ok if I did some percussive therapy myself - and showed her what I had been taught. She said that would be great and certainly would help Sara.
I lowered her bed to the floor, but kept her head up better than 30 degrees. I crawled onto the bed and put her legs over mine. I leaned forward and scooped up under her arms, supported her head, and rolled back until she was on my lap in a big hug. After I checked to make sure she was ok, I started patting her back with a cupped hand, all up and down the right lung. For good meansure, I did it up and down the left lung also, then returned to the right lung. I then just held her up against me. It was so nice just to be able to hold her, even if it probably looked really strange to anyone looking. She's still my baby girl. I gently rolled forward until she was against the bed and settled. She got a good cough going and I saw some junk appear in her tubing.
I stayed there and flexed her joints and checked the tone of her muscles. She has improved slightly in a few places. And when I noticed she had some resistance to my movements on the left arm I asked her if she could resist me, and she said yes. I told her to keep me from moving her arm. While she certainly isn't strong enough to actually do so, I did feel resistance to my movements. I told her that even that is good exercise.
I gently worked her arms and shoulders. She said that working her shoulders hurt some, and I suspect it is because she hasn't had much work there. They were very ginger with the arm with the PICC, and rarely touched the other arm, as it had a BP cuff on. After slowly working her shoulders I was able to get her arms out to her sides comfortably, and then gently above her head. I told her to notice how open her lungs feel when her arms change position, which she acknowledged. I asked her to work on taking bigger breaths when I work her arms, and she indicated she would try.
I did another bear hug and thumped her back and then her right side. When I rolled her back we were able to get her to balance her head on her neck. She does have very slight muscle control, but is very weak. I then gently held her head and asked her to move it any direction she could - which she did ever slightly. I told her that even a little movement and resistance is worth building upon. And then I released her head and let her roll back onto the pillow. I asked her if she had accomplished something and she smiled. I told her that this is what it is going to be like from here in...small movements...and working those movements and control for just a little more each time. I would rely upon her to tell me what she could make listen to her.
I left her watching the Oscars. I had to go pick up her brother and come home. I'll see her tomorrow.
I did just call in and check on her. The nursing staff is getting used to me calling in to check. The Kaiser staff was always great about it, too. They knew I would call at least once a night, before I went to sleep, so I could. The charge nurse told me that she was her patient and was doing well. She had spent some time in there talking to Sara and working on communication. She told me that Sara was resting now for the night.
Checking out the new Digs.
Man I love mapquest. You put in an address and step by step instructions to your destination. Well I found the place, but boy parking is not a fun situation there. So all of you going to visit Sara, be prepared to drive around a little looking for a good spot to park.
When I walked in the room I found Sara with her face covered in sweat. She was drenched. So I cleaned up her face and brought it to the nurses attention. I was a little worried that her breathing was rough and that she had that much perspiration on her. They took her temperature and found that she was about 100.5. So they gave her some tylonal to bring it down. Then they suctioned her and a lot of junk came up. Not a pretty site. The staff said they would give her more fluids and an X-ray to make sure she didn’t have phenomena. Her temp finally came down after a few hours and she stopped sweating. A relief for me. I called Kristina and let her know what was going on. She had me tell the staff to check her oxygen levels and she was down to 90. Good catch on Kristina’s part. I would never have thought to ask that. So another suction and a treatment at 5 pm and it was back up to normal.
The facility can take the X-ray, but it has to be processed someplace else. So Sara and I talked a lot. Her skin was very itchy and she wanted me to scratch he forehead and face. I told if she is needed anything in the middle of her body scratched, Tough luck. She laughed and we just hung out and watched TV together. She was having a good time, but I could tell the fever had taken some of her energy.
Sara has a roommate. The story behind her being there is very sad and her family is very sweet. The mother came over and asked me if she could talk to Sara once in a while. I told her “You will have to ask her, it’s up to her.” So she did. I showed her the letter board and made sure she understood the blinks. Then she went back to attending to her daughter. I got to meet a good deal of the family. They had 6 people in the room at one point. They were all very nice and we talked for a bit.
Well by 7:30 Sara was starting to get tired. Her eyes drift a little when she is tired. So I turned down the lights so she could get some rest. Of course she did the usual thing and kept looking at me and would not go to sleep. She may be in a new place, but she will not sleep if someone she loves is in the room. So I told her I would head out so she could rest.
I called Kristina and filled her in on everything up to that point. I had been giving her updates all day. I stopped off at my Best Buy store since it was on the way home. I had some equipment to drop off. Turns out I had to do a bunch of paper work that needed to be completed with the equipment so I didn’t get home till after 10. That will teach me to go into work on my day off. When I got home, I got a call from Kristina letting me know that the X-rays had come back and Sara has phenomena after all. She also let me know that they already started treating her for it. At least we caught it very early.
That all I have for now. I am sure Kristina and Daniel will have an update for Sunday.
Mike
When I walked in the room I found Sara with her face covered in sweat. She was drenched. So I cleaned up her face and brought it to the nurses attention. I was a little worried that her breathing was rough and that she had that much perspiration on her. They took her temperature and found that she was about 100.5. So they gave her some tylonal to bring it down. Then they suctioned her and a lot of junk came up. Not a pretty site. The staff said they would give her more fluids and an X-ray to make sure she didn’t have phenomena. Her temp finally came down after a few hours and she stopped sweating. A relief for me. I called Kristina and let her know what was going on. She had me tell the staff to check her oxygen levels and she was down to 90. Good catch on Kristina’s part. I would never have thought to ask that. So another suction and a treatment at 5 pm and it was back up to normal.
The facility can take the X-ray, but it has to be processed someplace else. So Sara and I talked a lot. Her skin was very itchy and she wanted me to scratch he forehead and face. I told if she is needed anything in the middle of her body scratched, Tough luck. She laughed and we just hung out and watched TV together. She was having a good time, but I could tell the fever had taken some of her energy.
Sara has a roommate. The story behind her being there is very sad and her family is very sweet. The mother came over and asked me if she could talk to Sara once in a while. I told her “You will have to ask her, it’s up to her.” So she did. I showed her the letter board and made sure she understood the blinks. Then she went back to attending to her daughter. I got to meet a good deal of the family. They had 6 people in the room at one point. They were all very nice and we talked for a bit.
Well by 7:30 Sara was starting to get tired. Her eyes drift a little when she is tired. So I turned down the lights so she could get some rest. Of course she did the usual thing and kept looking at me and would not go to sleep. She may be in a new place, but she will not sleep if someone she loves is in the room. So I told her I would head out so she could rest.
I called Kristina and filled her in on everything up to that point. I had been giving her updates all day. I stopped off at my Best Buy store since it was on the way home. I had some equipment to drop off. Turns out I had to do a bunch of paper work that needed to be completed with the equipment so I didn’t get home till after 10. That will teach me to go into work on my day off. When I got home, I got a call from Kristina letting me know that the X-rays had come back and Sara has phenomena after all. She also let me know that they already started treating her for it. At least we caught it very early.
That all I have for now. I am sure Kristina and Daniel will have an update for Sunday.
Mike
Saturday, February 23, 2008
Having some issues...
Sara is having more trouble breathing today. She is working hard and her heartrate is definately up. She is complaining of pain in her lungs and they don't sound very good. She also has a fever.
Mike is there with her today. He called me to tell me what was going on. I told him to make sure she wasn't reclined back too far, to have them get extra fluids into her (as she spikes fevers easily when even slightly dehydrated), be sure and suction her well, and check her oxygen saturation. It took quite a while for them to do any of that (and they still haven't given her any extra fluids). Her pulse-ox was at 90, so they decided to do a chest x-ray. When I talked to mike last they were just getting ready to take her over for that. He will call me with the results of it.
I talked to her on the phone and let her know that I knew what was going on with her. She indicated to Mike for me that she's ok. I told her that if she gives the word I will be there ASAP. So far she's ok with Mike being there and me working with the Mike and the staff to get this figured out.
I'll keep you posted.
Mike is there with her today. He called me to tell me what was going on. I told him to make sure she wasn't reclined back too far, to have them get extra fluids into her (as she spikes fevers easily when even slightly dehydrated), be sure and suction her well, and check her oxygen saturation. It took quite a while for them to do any of that (and they still haven't given her any extra fluids). Her pulse-ox was at 90, so they decided to do a chest x-ray. When I talked to mike last they were just getting ready to take her over for that. He will call me with the results of it.
I talked to her on the phone and let her know that I knew what was going on with her. She indicated to Mike for me that she's ok. I told her that if she gives the word I will be there ASAP. So far she's ok with Mike being there and me working with the Mike and the staff to get this figured out.
I'll keep you posted.
Friday, February 22, 2008
Good first day...
Sara had a good first night and day. She said she slept really well, and felt safe and that her needs were met by the staff. She is coughing a lot, but indicated that she wasn't worried when she coughed hard. I checked what had been suctioned out overnight and there was more than I expected. She was ok with it.
We talked a bunch and she had a good night and was encouraged. She didn't want to do much of anything today, as she was resting from all the excitement.
I met with her new Intensivist and we discussed the plan of treatment for her. He concurs with trying to get her off the ventilator. He said he likes to take it slow and relies on the respiratory therapists to let him know when everything is good to go for the next phase. He also has no problem with us bringing in our own Neurologist to try and help her.
Michael and I spent a lot of time with her today and there was definately a lot of laughter. Her ability to laugh so freely is fascinating to her roommates family. She is comatose and they are very encouraged seeing another girl making such progress. The understand that Sara and her roomates circumstances and injuries are VERY different, but I think they are happy to see someone else young doing well.
I reviewed her discharge orders from Kaiser and checked that the orders had been accurately followed through at Rossmoor. They didn't mind that I checked and actually seemed to appreciate the second check. While there I had the opportunity to show a couple of staff how to communicate with her. The shift RNs learned right away and the lead RT has taken it upon herself to make sure her team gets up to speed quickly with communicating to Sara. She was calling Sara "Boo" today, which made her seem to giggle. She's a black woman with attitude and I asked Sara if she reminded her of Nurse-Athie at Kaiser. She said yes then seemed to get a little teary eyed. Then I felt bad for making the association. I know that a few key people at Kaiser made a huge difference for her and I do want her to remember them. As if she could actually forget...
So, this appears to have been a good move for her. She wants to rest for the next few days and then Monday get into her new routine. She's looking forward to being dressed and getting out of her room. The ventilator has a battery unit and they encourage getting her out of the room at least twice a week. She'll leave her room also for baths, once we figure out a better sling to lift her with.
Right now, I am exhausted. I wanted to give at least some update, but I have got to get horizontal or i'll fall down.
We talked a bunch and she had a good night and was encouraged. She didn't want to do much of anything today, as she was resting from all the excitement.
I met with her new Intensivist and we discussed the plan of treatment for her. He concurs with trying to get her off the ventilator. He said he likes to take it slow and relies on the respiratory therapists to let him know when everything is good to go for the next phase. He also has no problem with us bringing in our own Neurologist to try and help her.
Michael and I spent a lot of time with her today and there was definately a lot of laughter. Her ability to laugh so freely is fascinating to her roommates family. She is comatose and they are very encouraged seeing another girl making such progress. The understand that Sara and her roomates circumstances and injuries are VERY different, but I think they are happy to see someone else young doing well.
I reviewed her discharge orders from Kaiser and checked that the orders had been accurately followed through at Rossmoor. They didn't mind that I checked and actually seemed to appreciate the second check. While there I had the opportunity to show a couple of staff how to communicate with her. The shift RNs learned right away and the lead RT has taken it upon herself to make sure her team gets up to speed quickly with communicating to Sara. She was calling Sara "Boo" today, which made her seem to giggle. She's a black woman with attitude and I asked Sara if she reminded her of Nurse-Athie at Kaiser. She said yes then seemed to get a little teary eyed. Then I felt bad for making the association. I know that a few key people at Kaiser made a huge difference for her and I do want her to remember them. As if she could actually forget...
So, this appears to have been a good move for her. She wants to rest for the next few days and then Monday get into her new routine. She's looking forward to being dressed and getting out of her room. The ventilator has a battery unit and they encourage getting her out of the room at least twice a week. She'll leave her room also for baths, once we figure out a better sling to lift her with.
Right now, I am exhausted. I wanted to give at least some update, but I have got to get horizontal or i'll fall down.
Thursday, February 21, 2008
After 121 days she is finally out of Intensive Care...
Sara moved out of ICU today. We moved to Rossmoor Care Center in Walnut Creek. To say today was a long day would be an understatement.
As soon as it was evident that it was really going to happen today the entire mood around Sara, and her mood, changed. It was happy because she was moving to the next level of care, but a little sad because she was leaving. Many nurses and staff members came by to give her hugs and kisses, rub her arm, hug me, and wish us all well. Some staffers could barely hold their emotions, but everyone was hopeful for her continued journey.
The drive to walnut creek was pretty long, but it was raining and we all went the speed limit. (Speed limit...what a concept.) She had a great nurse for the transit and we called him during the ride just to make sure she was ok.
Getting to Rossmoor was ok. Warning...there is no parking around there. I'll email out directions and parking instructions for the normal visitors.
We got there and they put her in her room. The hooked her up to the ventilator and we started stripping off stuff she doesn't need here. Off came the monitoring leads. Off came the blood pressure cuff. Off came the SCDs, but only because they need to order new ones for their equipment. (those are the air pressure leggings that keep down deep vein thrombosis in immobile patients.) Off came the IV fluid line, although the PICC catheter remains. She must have felt almost naked.
She blinked to get our attention. There were problems with the ventilator settings. She was saying she was getting too much pressure. So we talked to the RT who adjusted the vent. Sara seemed to be struggling and we tried suctioning, positioning, and she kept saying she was getting too much from the vent. She was not holding a good oxygen saturation, so they had to give her oxygen while we figured out what was going on. After a couple of hours of her struggling, and my struggling to understand this ventilator and its settings, and what to tell the RT about what the problem was, we all finally stumbled on the right words to communicate HER settings and what was needed. Basically, instead of giving Sara pressure support when she inhaled, just to overcome the resistance of the tubing, they had set her vent to give her constant pressure much higher than she needed. It wasn't a problem when she inhaled, but when she exhaled she was fighting the pressure of the ventilator. The poor kid was having to work to push out a breath and got all sweaty and tired and was very uncomfortable for a while.
There were a few other challenges getting her settled into the room and introduced to the new staff. I have to laugh now, but at the time I was pretty tense. The two women who came and gave her a quick bath after her road trip (and a huge bowel movement) really didn't speak english. They are speaking to each other in Tagalog, and I'm trying to talk to them in English. The put a sling under her to weigh her and then take her to the shower. When they hoisted her up she ended up all dangling like a fruit sack with arms and legs hanging out but with her head rolled up over her chest. It wasn't funny at the time, but to remember the look on her face...too funny. I think SNARF would be the word. Well, I had to tell them two or three times to put her down. Even the RT was wondering what they were doing... I'm going to have to figure out a different sling.
Well, after a few more hours of decorating her room, futzing with her ventilator alarms (to make sure they were all set and working), talking to staff, figuring out the routine, signing a mountain of paperwork, and turning down the suction pressure so it didn't hurt when they suctioned her traech...well, then we couldn't think of anything else we had to set up or check or communicate. And, frankly, I was exhausted by then. We checked in with Sara and she felt like everything would be OK tonight. I told her that she may cough and get in a funky position and end up staying there until someone noticed. She understood. But, we put up a rolled up blanket to the side she keeps moving to. I told her that she may poop and it wouldn't get noticed right away, and that she needed to let them know if they don't check. She understands. I told her that they don't know her very well and everyone may not realize she is aware (her roommate is not awake or aware at all) and not talk to her immediately. She understands.
So, I tore myself away. I have to trust that everything will be OK. But, being me I did get a phone number to call into at night to check on her. I've already called once and I've only been gone two hours. Although this is a good step, certainly in the right direction for her, it is still very scary for me, and I am sure her too. I told her that tonight was going to tell us a lot and that I would be there tomorrow morning and we'd see how the night went. We'll correct anything we need to. But, I think she may end up sleeping really well. Or, like her mother, not very much at all.
Ok. I'm rambling because I am nervous. It is too soon to call again and I certainly don't want to bug the staff too much. They have a lot more patients than just Sara. She is certainly the youngest, and that made me a little sad. But, at least her roommate is closer to her own age, although currently vegetative. I can't say enough good about the nursing staff she had at Kaiser... They got her when she was barely able to peek out of her eyes...and they encircled and supported her until she was ready to move on. She left there today able to smile, communicate freely with her eyes, cough strong, and show emotions. She left there loved and encouraged by people who have cared for and nurtured her back to health along side her family. What an awesome ICU staff. I said in my first couple of entries when she came to Kaiser that then whole environment FELT different...it felt more comfortable, more positive. UCDavis was very efficient, and detailed, and absolutely focused on only her (it was also one to one nursing). That approach saved her. The nursing she got from Kaiser healed her and has strengthened her as much as it could. For that we will be eternally grateful.
The rest is up to her, and time.
As soon as it was evident that it was really going to happen today the entire mood around Sara, and her mood, changed. It was happy because she was moving to the next level of care, but a little sad because she was leaving. Many nurses and staff members came by to give her hugs and kisses, rub her arm, hug me, and wish us all well. Some staffers could barely hold their emotions, but everyone was hopeful for her continued journey.
The drive to walnut creek was pretty long, but it was raining and we all went the speed limit. (Speed limit...what a concept.) She had a great nurse for the transit and we called him during the ride just to make sure she was ok.
Getting to Rossmoor was ok. Warning...there is no parking around there. I'll email out directions and parking instructions for the normal visitors.
We got there and they put her in her room. The hooked her up to the ventilator and we started stripping off stuff she doesn't need here. Off came the monitoring leads. Off came the blood pressure cuff. Off came the SCDs, but only because they need to order new ones for their equipment. (those are the air pressure leggings that keep down deep vein thrombosis in immobile patients.) Off came the IV fluid line, although the PICC catheter remains. She must have felt almost naked.
She blinked to get our attention. There were problems with the ventilator settings. She was saying she was getting too much pressure. So we talked to the RT who adjusted the vent. Sara seemed to be struggling and we tried suctioning, positioning, and she kept saying she was getting too much from the vent. She was not holding a good oxygen saturation, so they had to give her oxygen while we figured out what was going on. After a couple of hours of her struggling, and my struggling to understand this ventilator and its settings, and what to tell the RT about what the problem was, we all finally stumbled on the right words to communicate HER settings and what was needed. Basically, instead of giving Sara pressure support when she inhaled, just to overcome the resistance of the tubing, they had set her vent to give her constant pressure much higher than she needed. It wasn't a problem when she inhaled, but when she exhaled she was fighting the pressure of the ventilator. The poor kid was having to work to push out a breath and got all sweaty and tired and was very uncomfortable for a while.
There were a few other challenges getting her settled into the room and introduced to the new staff. I have to laugh now, but at the time I was pretty tense. The two women who came and gave her a quick bath after her road trip (and a huge bowel movement) really didn't speak english. They are speaking to each other in Tagalog, and I'm trying to talk to them in English. The put a sling under her to weigh her and then take her to the shower. When they hoisted her up she ended up all dangling like a fruit sack with arms and legs hanging out but with her head rolled up over her chest. It wasn't funny at the time, but to remember the look on her face...too funny. I think SNARF would be the word. Well, I had to tell them two or three times to put her down. Even the RT was wondering what they were doing... I'm going to have to figure out a different sling.
Well, after a few more hours of decorating her room, futzing with her ventilator alarms (to make sure they were all set and working), talking to staff, figuring out the routine, signing a mountain of paperwork, and turning down the suction pressure so it didn't hurt when they suctioned her traech...well, then we couldn't think of anything else we had to set up or check or communicate. And, frankly, I was exhausted by then. We checked in with Sara and she felt like everything would be OK tonight. I told her that she may cough and get in a funky position and end up staying there until someone noticed. She understood. But, we put up a rolled up blanket to the side she keeps moving to. I told her that she may poop and it wouldn't get noticed right away, and that she needed to let them know if they don't check. She understands. I told her that they don't know her very well and everyone may not realize she is aware (her roommate is not awake or aware at all) and not talk to her immediately. She understands.
So, I tore myself away. I have to trust that everything will be OK. But, being me I did get a phone number to call into at night to check on her. I've already called once and I've only been gone two hours. Although this is a good step, certainly in the right direction for her, it is still very scary for me, and I am sure her too. I told her that tonight was going to tell us a lot and that I would be there tomorrow morning and we'd see how the night went. We'll correct anything we need to. But, I think she may end up sleeping really well. Or, like her mother, not very much at all.
Ok. I'm rambling because I am nervous. It is too soon to call again and I certainly don't want to bug the staff too much. They have a lot more patients than just Sara. She is certainly the youngest, and that made me a little sad. But, at least her roommate is closer to her own age, although currently vegetative. I can't say enough good about the nursing staff she had at Kaiser... They got her when she was barely able to peek out of her eyes...and they encircled and supported her until she was ready to move on. She left there today able to smile, communicate freely with her eyes, cough strong, and show emotions. She left there loved and encouraged by people who have cared for and nurtured her back to health along side her family. What an awesome ICU staff. I said in my first couple of entries when she came to Kaiser that then whole environment FELT different...it felt more comfortable, more positive. UCDavis was very efficient, and detailed, and absolutely focused on only her (it was also one to one nursing). That approach saved her. The nursing she got from Kaiser healed her and has strengthened her as much as it could. For that we will be eternally grateful.
The rest is up to her, and time.
Wednesday, February 20, 2008
Waiting for Go...
We are here, waiting for the word that everything is a Go. Seeing moves like it it...Doctors writing orders, nurses charting changes and bagging traech supplies, clerks scurrying around. I still don't have the solid OK, but it is certainly looks like somebody is moving today.
Sara is ready. Ready to move to the next level, the next phase of her journey. We all are. Its a bummer that its not close to home, but the next move definately will be.
Sounds like the person responsible for yesterday's (and last 4 days SNAFU) is outside of her room. So I'm ear hustling so I can find out what is going on.
OMG...it gets even better. She just walked in here...actually, gave me the finger summons outside of Sara's room. She's not going AGAIN...
WTF - now she's telling me that she has to get a signature on a piece of paper that says that a Kaiser doc will follow her care. DUH! Did she just not know, um, her job? I am beyond pissed. So, since I am pegged at unreasonable I am going to go settle, and setup the speech computer in front of Sara. I'd like to know her thoughts on this.
Should be interesting...
Sara is ready. Ready to move to the next level, the next phase of her journey. We all are. Its a bummer that its not close to home, but the next move definately will be.
Sounds like the person responsible for yesterday's (and last 4 days SNAFU) is outside of her room. So I'm ear hustling so I can find out what is going on.
OMG...it gets even better. She just walked in here...actually, gave me the finger summons outside of Sara's room. She's not going AGAIN...
WTF - now she's telling me that she has to get a signature on a piece of paper that says that a Kaiser doc will follow her care. DUH! Did she just not know, um, her job? I am beyond pissed. So, since I am pegged at unreasonable I am going to go settle, and setup the speech computer in front of Sara. I'd like to know her thoughts on this.
Should be interesting...
Tuesday, February 19, 2008
Delays
So, Sara ended up not getting transfered today. A lot of weird unnecessary stuff happened today. I'm going to summarize by saying The discharge office dropped the ball pretty hard and is still giving Kristina guff about it. She should be getting transfered tomorrow.
Monday, February 18, 2008
Lots to update...
It has certainly been nearly a week of constant change. It has come so quick that I have not had opportunity to update, and when I did have time I was exhausted from all of it. So, let me update the world on Sara's Status.
As I had blogged before, we had a discharge planning meeting a few weeks ago. Kaiser discharge planners were going to look into Kentfield and other subacute facilities, and they encouraged me to continue to look for a subacute closer to home. Well, we found both on the same day. Kaiser found Rossmore Care Center in Walnut Creek and I found Evergreen Rehab in Petaluma.
I received three calls in rapid succession on Wednesday telling me to go look at Rossmore, and I let them know to check out Evergreen. I called my son and asked him if he would come out to Walnut Creek and look at the place with me. I value his opinion and he'd see things I might not focus on. So, we jumped in the car (BTW - it is all back and working. Got it back on Tuesday after all those repairs...yikes...$$) and drove to Walnut Creek. Almost 3 hours later we arrived there...three hours...75 miles closer and a whole lot more traffic. Ok. Well, its about the care and not the drive (as my 16 year old son pointed out to me...)
We took a look outside the building. Clean, cared for. Good start. We went in and talked to the Assistant Director of Nursing and asked for a tour. The admissions guy had gone for the day and they were very pleasant to accomodate us. She walked us through the skilled nursing unit. That is populated by just seniors. It is the nursing home portion of the facility. It was also clean, no seniors were calling out, some were out of their rooms talking to others, and there was no overwhelming odor of urine. It sounds bad to some people, but these are basics when looking at a unit.
She walked us back to the SubAcute unit and the nursing station. She checked in with the nurse at the desk as to what we were going to be doing there. I liked that. She also checked in with one of the two unit RNs on duty to let her know too. She took us slowly down the row of rooms answer our questions - 6:1 nursing ratio, 2 RNs and 4 CNAs, 26yo female is youngest, they are all trained on ventilator management, they would be comfortable communicating however Sara needed, they would watch her a little closer since she can't call a nurse, yes, that is a kind of bathtub we could use with her, they don't have to stay in their rooms all the time, they have good Physical Therapists and the residents look forward to PT, we can decorate her room, we can bring in our own Neurologist and treatments but have to be coordinated with the Medical Director, in case of a major issue closest hospitals are Kaiser Walnut Creek and John Muir Medical Center, yes there are visiting hours, no mom is not restricted to those...
Michael and I came away with a pretty good feel for the place, but I had questions for the admissions guy there, and the discharge planners at Kaiser the next day.
Well, before I could get a call to anyone, they were blowing up my phone. "Sara is going to Rossmore tomorrow". Wait, WHAT? I haven't even OK'd the place, gotten the rest of my information, Kaiser hasn't looked into Evergreen. "Well, What is the PROBLEM?" I nearly fell over. Um,no problem, except that I don't have all the information yet, I was told I have until Friday to get all my info and get back with the discharge planners, and I called them with another location to look at... "Well, they just aren't going to do that..." Ok...so we never really had a choice and getting a chance to check out a place that will be responsible for her very life amounts to use getting a walkthrough to say we've seen the place. Warm fuzzy I do not have...
Well, long story short...we don't have a choice. The head of discharge planning basically gave me the ok to look at other places to get me out of their hair/way/whatever. They never had any intention of placing her anyplace other than what they came up with. Ok. I get that. But it would have been nice not to have my time wasted looking in earnest for a place closer to home for her, while also exploring trying to bring her home. It is just that one other thing on my plate that I truly didn't need to have.
So, after getting hounded by the discharge planner for the day I finally just said "Yes, go ahead, send her anywhere you people want to shove her. Since it doesn't matter what I know, of feel, or say...Since it doesn't matter if her family feels it will be safe...Since you've already told her before me...Since you seem so in an all fired hurry to get her out of your way...Yes...Send her whereever...Just tell me where to show up..."
Then I called Gina - our social worker. I was losing it (yes, again) about all of it. I had gotten a call from her Speech Therapist that "now since she's moving to Rossmoor that Kaiser doesn't want to pay for the computer out of the main funds, but out of skilled nursing funds...and they want to keep the computer in hospital inventory so it won't follow her anyway." I got this call maybe 20 minutes after saying Yes to moving her. Amazing. Takes weeks and weeks for physical therapy to start, but it takes 20 minutes for durable medical equipment necessary for her communication to get punted over to another group of people to review...
I know DQB doesn't like it when I am critical of Kaiser or the process or any of that, but I think even SHE would be shaking her head at this and getting on the phone screaming on Sara's behalf. But, saving her from that headache, I do it.
By the end of the day I had been talked to by no less than 6 people trying to peel me off the ceiling over this. Listened to everyone's explanation about their understanding of their facet of the big picture, and to how little they understood what my issue was. So, I ended the day telling the head of discharge planning that I was going to station myself in my daughters hospital room the following day, between the door and her bed, so that maybe I could find out what is really going on and what is being said - as that is my responsiblity as her Mother and Conservator.
A few minutes later I get a call that she has a slight temperature and they've decided not to move her until Tuesday... Way to go Sara. She probably heard everything going on (since they were doing most of it in front of her) and got upset and spiked a temperature. Good girl.
I saw her the next morning and we talked about all of this. The events of the day before scared the hell out of her and we both had to settle down a bit and talk it through.
So, she and I talked about our worries and plans and what the step means. We talked about how we're going into this change not quite knowing the path it is going to take us, so we will just make our own - our own care plan. Then, instead of treading water, we can swim for something.
On Friday I met with Gina the social worker and expressed again my fears on her behalf - specifically that the communication computer was going to get lost in the transition or that we'd have to start all over again and she'd just been waiting to get a voice back. I told her that it was a safety issue to me, as she was not going to be under direct view of the nursing station, and on 6:1 nursing without the ability to call for help if she needed suction or was in pain. That is what truly scares me. She agreed and spoke with the right people at Kaiser. Since it is their internal process that is going to hold up the computer for payment and ownership, the DME department and the manufacturer of the device decided to rent us one for Sara's use in the interim.
The representative delivered it to us on Friday night after driving straight down from Redding. So, now we can help Sara get a voice back, be able to call for help, be able to share her thoughts and express her desires. She and I have quite a bit of programming to do (yes, I am reading the books!) but we are both greatly encouraged at her finally having a way to express herself. That, to me, seems like the hardest part of all of this - being muted in a vocal world...
The wheelchair, on the other hand, is not going to get ordered just yet, by Kaiser. It will be dropped in transition and I need to start putting together a list of everything she needs and start working the payers to cover it, or find ways to cover it myself
But, she's ready to move on. She is feeling strong...feeling like it is time for the next phase of her recovery. Its hard to believe that tomorrow she leaves ICU. She would have spent 119 days in Intensive Care - one day short of 4 months. It has been an eternity and a single moment at the same time...
As I had blogged before, we had a discharge planning meeting a few weeks ago. Kaiser discharge planners were going to look into Kentfield and other subacute facilities, and they encouraged me to continue to look for a subacute closer to home. Well, we found both on the same day. Kaiser found Rossmore Care Center in Walnut Creek and I found Evergreen Rehab in Petaluma.
I received three calls in rapid succession on Wednesday telling me to go look at Rossmore, and I let them know to check out Evergreen. I called my son and asked him if he would come out to Walnut Creek and look at the place with me. I value his opinion and he'd see things I might not focus on. So, we jumped in the car (BTW - it is all back and working. Got it back on Tuesday after all those repairs...yikes...$$) and drove to Walnut Creek. Almost 3 hours later we arrived there...three hours...75 miles closer and a whole lot more traffic. Ok. Well, its about the care and not the drive (as my 16 year old son pointed out to me...)
We took a look outside the building. Clean, cared for. Good start. We went in and talked to the Assistant Director of Nursing and asked for a tour. The admissions guy had gone for the day and they were very pleasant to accomodate us. She walked us through the skilled nursing unit. That is populated by just seniors. It is the nursing home portion of the facility. It was also clean, no seniors were calling out, some were out of their rooms talking to others, and there was no overwhelming odor of urine. It sounds bad to some people, but these are basics when looking at a unit.
She walked us back to the SubAcute unit and the nursing station. She checked in with the nurse at the desk as to what we were going to be doing there. I liked that. She also checked in with one of the two unit RNs on duty to let her know too. She took us slowly down the row of rooms answer our questions - 6:1 nursing ratio, 2 RNs and 4 CNAs, 26yo female is youngest, they are all trained on ventilator management, they would be comfortable communicating however Sara needed, they would watch her a little closer since she can't call a nurse, yes, that is a kind of bathtub we could use with her, they don't have to stay in their rooms all the time, they have good Physical Therapists and the residents look forward to PT, we can decorate her room, we can bring in our own Neurologist and treatments but have to be coordinated with the Medical Director, in case of a major issue closest hospitals are Kaiser Walnut Creek and John Muir Medical Center, yes there are visiting hours, no mom is not restricted to those...
Michael and I came away with a pretty good feel for the place, but I had questions for the admissions guy there, and the discharge planners at Kaiser the next day.
Well, before I could get a call to anyone, they were blowing up my phone. "Sara is going to Rossmore tomorrow". Wait, WHAT? I haven't even OK'd the place, gotten the rest of my information, Kaiser hasn't looked into Evergreen. "Well, What is the PROBLEM?" I nearly fell over. Um,no problem, except that I don't have all the information yet, I was told I have until Friday to get all my info and get back with the discharge planners, and I called them with another location to look at... "Well, they just aren't going to do that..." Ok...so we never really had a choice and getting a chance to check out a place that will be responsible for her very life amounts to use getting a walkthrough to say we've seen the place. Warm fuzzy I do not have...
Well, long story short...we don't have a choice. The head of discharge planning basically gave me the ok to look at other places to get me out of their hair/way/whatever. They never had any intention of placing her anyplace other than what they came up with. Ok. I get that. But it would have been nice not to have my time wasted looking in earnest for a place closer to home for her, while also exploring trying to bring her home. It is just that one other thing on my plate that I truly didn't need to have.
So, after getting hounded by the discharge planner for the day I finally just said "Yes, go ahead, send her anywhere you people want to shove her. Since it doesn't matter what I know, of feel, or say...Since it doesn't matter if her family feels it will be safe...Since you've already told her before me...Since you seem so in an all fired hurry to get her out of your way...Yes...Send her whereever...Just tell me where to show up..."
Then I called Gina - our social worker. I was losing it (yes, again) about all of it. I had gotten a call from her Speech Therapist that "now since she's moving to Rossmoor that Kaiser doesn't want to pay for the computer out of the main funds, but out of skilled nursing funds...and they want to keep the computer in hospital inventory so it won't follow her anyway." I got this call maybe 20 minutes after saying Yes to moving her. Amazing. Takes weeks and weeks for physical therapy to start, but it takes 20 minutes for durable medical equipment necessary for her communication to get punted over to another group of people to review...
I know DQB doesn't like it when I am critical of Kaiser or the process or any of that, but I think even SHE would be shaking her head at this and getting on the phone screaming on Sara's behalf. But, saving her from that headache, I do it.
By the end of the day I had been talked to by no less than 6 people trying to peel me off the ceiling over this. Listened to everyone's explanation about their understanding of their facet of the big picture, and to how little they understood what my issue was. So, I ended the day telling the head of discharge planning that I was going to station myself in my daughters hospital room the following day, between the door and her bed, so that maybe I could find out what is really going on and what is being said - as that is my responsiblity as her Mother and Conservator.
A few minutes later I get a call that she has a slight temperature and they've decided not to move her until Tuesday... Way to go Sara. She probably heard everything going on (since they were doing most of it in front of her) and got upset and spiked a temperature. Good girl.
I saw her the next morning and we talked about all of this. The events of the day before scared the hell out of her and we both had to settle down a bit and talk it through.
So, she and I talked about our worries and plans and what the step means. We talked about how we're going into this change not quite knowing the path it is going to take us, so we will just make our own - our own care plan. Then, instead of treading water, we can swim for something.
On Friday I met with Gina the social worker and expressed again my fears on her behalf - specifically that the communication computer was going to get lost in the transition or that we'd have to start all over again and she'd just been waiting to get a voice back. I told her that it was a safety issue to me, as she was not going to be under direct view of the nursing station, and on 6:1 nursing without the ability to call for help if she needed suction or was in pain. That is what truly scares me. She agreed and spoke with the right people at Kaiser. Since it is their internal process that is going to hold up the computer for payment and ownership, the DME department and the manufacturer of the device decided to rent us one for Sara's use in the interim.
The representative delivered it to us on Friday night after driving straight down from Redding. So, now we can help Sara get a voice back, be able to call for help, be able to share her thoughts and express her desires. She and I have quite a bit of programming to do (yes, I am reading the books!) but we are both greatly encouraged at her finally having a way to express herself. That, to me, seems like the hardest part of all of this - being muted in a vocal world...
The wheelchair, on the other hand, is not going to get ordered just yet, by Kaiser. It will be dropped in transition and I need to start putting together a list of everything she needs and start working the payers to cover it, or find ways to cover it myself
But, she's ready to move on. She is feeling strong...feeling like it is time for the next phase of her recovery. Its hard to believe that tomorrow she leaves ICU. She would have spent 119 days in Intensive Care - one day short of 4 months. It has been an eternity and a single moment at the same time...
Sunday, February 17, 2008
Day of Many Things
Sara had a full day today, but in a good way. For starters, Kristina showed up with Sara's voice machine thing. So we set that up. It was really loud. Unfortunatly we weren't able to position it in a good place, so Sara was having problems reading the letters on it. She was still able to to spell some stuff out for us, and I did figure out how to turn down the volume.
Dr. Immel (our old science teacher) came and visited again today as well. He brought some decorations from his wife. While i was messing with the settings on the speech machine. Dr. Immel took a shot at using the letter board. He did well. Sara spelled out for him "I can't think of anything", which is better then nothing.
Sara's friend Victoria was in Sacramento, so she stopped by for a short time as well.
Sara Also spent a very long time in the cardiac chair today. She was in there since 10 in the morning, and was still in it when I left at 5:30.
The best news by far however, is that Sara is scheduled to be moved this week. I'll let Kristina fill in more on that, since I don't even remember where she is getting moved to.
Dr. Immel (our old science teacher) came and visited again today as well. He brought some decorations from his wife. While i was messing with the settings on the speech machine. Dr. Immel took a shot at using the letter board. He did well. Sara spelled out for him "I can't think of anything", which is better then nothing.
Sara's friend Victoria was in Sacramento, so she stopped by for a short time as well.
Sara Also spent a very long time in the cardiac chair today. She was in there since 10 in the morning, and was still in it when I left at 5:30.
The best news by far however, is that Sara is scheduled to be moved this week. I'll let Kristina fill in more on that, since I don't even remember where she is getting moved to.
Thursday, February 14, 2008
Sara and Michael
Michael came with me to see his sister yesterday. What a fun pair of goofballs... I can't remember the last time the three of us were in the same room with the two of them laughing and playing with each other... So, I got a real treat yesterday. I watched her brother struggle with the communication board and her be patient with him. They finally worked it out so he understood her pretty well. At one point her yes/no answers weren't very clear to him, and he popped off with a hilarious "blink like a MAN!" and we all laughed. I just sat off to the side, finishing her outfit for valentines day and watching my children enjoy each other. It is the most satisfied i've been as a mother since all this started - seeing both of my children happy with each other...
Michael had come with me because Kaiser called me yesterday and said they had found a subacute unit for Sara and they needed me to go look at it and decide before Friday. Of course, my stress level ramped back up to nauseated. So, I talked to Michael and asked him to come with me. I value his opinion and wanted his take on the place on behalf of his sister. I figured if he came away with a negative sense she probably would too...
The place is out in Walnut Creek. On paper it is 45 minutes closer, but the actual drive made it about 30 minutes longer. At least going to Sacto you don't have to fight traffic everywhere. But, anyway, that can't be a driving factor on the decision. (hehe...get it...driving factor...) We got there after the unit manager had left for the day, so the assistant director of nursing gave us a tour. She showed us the skilled nursing unit (old people not going anywhere) and then the subacute unit (mostly old people too sick to go back to skilled nursing and younger people too damaged to go anywhere else). The unit was nice enough. Clean. Fairly open. Two people to a room. The nursing ratio is 6:1, with two of those being RNs and 4 being CNAs. The youngest patient they have on subacute is 26 and female. I think I would ask for her and Sara to share a room to close the age gap a little. It looked like we could decorate the room a bit, to make it more interesting/happy. The staff was pleasant and helpful. They seem to feel comfortable with ventilator patients, and are confident they could communicate with her once we showed them. I also inquired if I could bring in my own Neurologist to work with Sara. They said it would have to be coordinated with the Medical Director, but that was OK. That means I would be able to get her the alternate therapy and see if we can make a difference for her. Its already been almost 120 days, so I hope it is not too late.
I also found a place in Petaluma on my own. I have to have discharge fax them over the information on Sara's care and see if they can provide the same level of care as the Kindred facility. If they can, well, then it may be a no-brainer. I am waiting for a call from the Neurologist I want to work with to see if he has a preference for care location.
Sara's encouraged and ready to move on. She'll miss the nurses at Kaiser, but its is time for a change of scenery/a change of focus. She knows that every step brings her closer to home. And, there has never been any doubt that home is where she will eventually be. I couldn't do any less for my daughter.
Michael had come with me because Kaiser called me yesterday and said they had found a subacute unit for Sara and they needed me to go look at it and decide before Friday. Of course, my stress level ramped back up to nauseated. So, I talked to Michael and asked him to come with me. I value his opinion and wanted his take on the place on behalf of his sister. I figured if he came away with a negative sense she probably would too...
The place is out in Walnut Creek. On paper it is 45 minutes closer, but the actual drive made it about 30 minutes longer. At least going to Sacto you don't have to fight traffic everywhere. But, anyway, that can't be a driving factor on the decision. (hehe...get it...driving factor...) We got there after the unit manager had left for the day, so the assistant director of nursing gave us a tour. She showed us the skilled nursing unit (old people not going anywhere) and then the subacute unit (mostly old people too sick to go back to skilled nursing and younger people too damaged to go anywhere else). The unit was nice enough. Clean. Fairly open. Two people to a room. The nursing ratio is 6:1, with two of those being RNs and 4 being CNAs. The youngest patient they have on subacute is 26 and female. I think I would ask for her and Sara to share a room to close the age gap a little. It looked like we could decorate the room a bit, to make it more interesting/happy. The staff was pleasant and helpful. They seem to feel comfortable with ventilator patients, and are confident they could communicate with her once we showed them. I also inquired if I could bring in my own Neurologist to work with Sara. They said it would have to be coordinated with the Medical Director, but that was OK. That means I would be able to get her the alternate therapy and see if we can make a difference for her. Its already been almost 120 days, so I hope it is not too late.
I also found a place in Petaluma on my own. I have to have discharge fax them over the information on Sara's care and see if they can provide the same level of care as the Kindred facility. If they can, well, then it may be a no-brainer. I am waiting for a call from the Neurologist I want to work with to see if he has a preference for care location.
Sara's encouraged and ready to move on. She'll miss the nurses at Kaiser, but its is time for a change of scenery/a change of focus. She knows that every step brings her closer to home. And, there has never been any doubt that home is where she will eventually be. I couldn't do any less for my daughter.
Tuesday, February 12, 2008
First phone "conversation"
I am still "car challenged" and expect to get the truck back today. Lastnight I called the ICU to check on Sara and her nurse said she appeared sad. I told her that I called also to have her forward the phone into Sara's room so I could talk to her, which she did.
I told Sara about everything going on around here - the car, the cat, work, yadda yadda. I started to notice a little sound coming back from her side of the phone. So, I asked her if she was making sounds intentionally - and she repeated it. Pretty much disbelieving I asked her to set off her ventilator to confirm (she can hold her breath, or exhale longer and it trips the alarm on the vent). She set off the vent and it reset to normal. I was shocked. She was communicating back, over the phone, any way she could. So I quieted down any background noise on my end of the call so I could hear her efforts. When ever I would talk about something that yielded some confirmation or affirmation she'd make a little throat or mouth sound - like a gurgle. It sounds pretty silly to anybody else, but I was thrilled that we could exchange anything. Talking to Sara these days you have to watch her face for expressions, yes and no with her eyes, smiles, frowns, tongue sticking out, etc. This was the first time since mid October I was actually able to have a two way interchange with my daughter over the phone. Needless to say, I was thrilled.
After about 45 minutes on the phone with her I called the nurses station on the other line. I asked the nurse to go into her room and ask her if she wanted to spell anything out to tell me before I hung up...she indicated yes to the nurse. She spelled out "I Love You." Mommy got a big warm fuzzy...still got it... And then she spelled out a message to the nurse that she was uncomfortable and needed some body attention, which she attended to. I told my girl goodnight and told her I would be up there tonight, without fail. So, now I'm going to get on the phone with the Ford dealership and hop on them to make it happen.
She's such an amazing girl...I can't believe it.
I told Sara about everything going on around here - the car, the cat, work, yadda yadda. I started to notice a little sound coming back from her side of the phone. So, I asked her if she was making sounds intentionally - and she repeated it. Pretty much disbelieving I asked her to set off her ventilator to confirm (she can hold her breath, or exhale longer and it trips the alarm on the vent). She set off the vent and it reset to normal. I was shocked. She was communicating back, over the phone, any way she could. So I quieted down any background noise on my end of the call so I could hear her efforts. When ever I would talk about something that yielded some confirmation or affirmation she'd make a little throat or mouth sound - like a gurgle. It sounds pretty silly to anybody else, but I was thrilled that we could exchange anything. Talking to Sara these days you have to watch her face for expressions, yes and no with her eyes, smiles, frowns, tongue sticking out, etc. This was the first time since mid October I was actually able to have a two way interchange with my daughter over the phone. Needless to say, I was thrilled.
After about 45 minutes on the phone with her I called the nurses station on the other line. I asked the nurse to go into her room and ask her if she wanted to spell anything out to tell me before I hung up...she indicated yes to the nurse. She spelled out "I Love You." Mommy got a big warm fuzzy...still got it... And then she spelled out a message to the nurse that she was uncomfortable and needed some body attention, which she attended to. I told my girl goodnight and told her I would be up there tonight, without fail. So, now I'm going to get on the phone with the Ford dealership and hop on them to make it happen.
She's such an amazing girl...I can't believe it.
Monday, February 11, 2008
laughing
Chris, a friend of Sara and I, came up with me today. We spent most of the day talking about silly internet stuff and old cartoons. We got Sara to laugh quite a bit. Half the time it set off her ventalator alarm too, which we realized sounds kind of like a clown nose. Of course that just made things even more funny.
On the medical front, Sara's pressure support on her ventalator is back up to 10. It was at 8 for a few days, apparently they felt she wasn't tolerating it well enough and put her back up. 10 is still pretty low though. Hopefully they'll have her back down again soon.
~Daniel H.
On the medical front, Sara's pressure support on her ventalator is back up to 10. It was at 8 for a few days, apparently they felt she wasn't tolerating it well enough and put her back up. 10 is still pretty low though. Hopefully they'll have her back down again soon.
~Daniel H.
Sunday, February 10, 2008
Saturday and Dad
I got up to see Sara early this Saturday. I wanted to make it up to her for last weekend. I was very sick and could not be near her. With Sara on the ventilator, if she catches a bad cold, it could be really hard on her. Kristina had told her I spent a day in the hospital and Sara had been a little worried about me. But that all changed when I she saw me. I spent the entire day just being with her. We watched a few really bad movies and some cartoons together. Sara didn’t want to interact all that much. She just wanted to be with me. It was nice and I had missed her so much. I had a mask on just in case so I couldn’t give her a kiss or anything, but I made sure I held her hand. I made sure that she knew I loved her and was proud of her as always. 6 pm rolled around and I could tell Sara was starting to get tired. I turned off the TV and we turned off the lights. She wouldn’t go to sleep though. She kept looking over at me to make sure I was still there. I asked her after a while, “Are you going to stay awake unit I leave?” she said yes. I then asked if I should leave so she could get some rest, and she said yes. She loves her family and wont rest if there is someone there. I had to tear myself away. I didn’t want to leave. I knew she needed some rest and the right thing to do was to leave so she could.
Thursday, February 7, 2008
Sometimes you just have to laugh...
I'm rolling down the road, talking to my sister-in-law when all of the sudden my truck starts making pretty strange sounds. Hmm. This is not good. Then, it just stopped..broke down. I dropped the call with Kim and just started laughing. It all has just gotten to be so comical, so unbelievable.
Anyway...got towed to the nearest Ford dealership. Looks like the alternator. But I didn't get to go cuddle with Sara tonight. That's all she and I had planned for tonight. Maybe see if we could catch some TV like we used to.
She's doing really well. I love that smile of hers. That mischevous mind and the jokes she plays on people. What a turd...
So - I had a discharge planning meeting yesterday. Met with the woman who threatened the denial letter, and her boss, and our social worker. They went over what it would even take to bring her home. The manager was trying to scare me, but that doesn't scare me now. What scares me is people's bullshit - like what her employee slung at me for no reason. I did speak my mind to her during the meeting - and then dropped it.
So, anyway, they gave me a huge list of things to worry about. And, I reminded them that although I want nothing more than to bring her home, I'm not stupid. Desire and ability are still pretty far apart. I told them that until they have IN WRITING from me that she is coming home that they are to continue looking for a subacute nursing unit for her, with the goal of her going to inpatient rehab when she can handle it. They expained that the continuing issue is lack of beds, and then that most subacute nursing units are really for elder care. Yeah...like a 19 needs to bunk next to a 91 year old.
I asked them if Kaiser would put her someplace they didn't have a contract with at present, like Kentfield Rehab. They have a stepdown unit for people who aren't ready for the main program. I know it seems like I am all over the place with where she is going, and what to do with her. Honestly, I am. I just want her home. I just want her where I can get her the alternative treatment. But, for every want, there are 5 reasons why it isn't happening yet. Makes you just want to laugh to keep from burstin into tears. I'm pretty much all cried out, though. They come once in a while.
So, on the house front if I had good credit and no dogs I would have a place. But if I had good credit I would just buy a house and who would care if I had dogs. It became a little bit of a moot point yesterday, when I found out some of the physical requirements to bring Sara home on a ventilator. I have to have a gas generator installed in the house. I have to do other improvements to a place. Nobody renting would allow me to make those kinds of modifications to the house. And, my bright idea that I could just bring her here and take over the second floor for just her - nope. Can't do it. Can't have her above the ground floor without an elevator. That'yll never happen in this apartment. They get all pissy if you even ask about doing anything.
The plan - Kaiser is going to try and get her into Kentfield. I am going to work on fixing my credit. She is going to continue to make slow progress and work to get off the vent. Kaiser is going to find an appropriate place for her to be, or she stays in Sacramento. I'm going to keep working and going to see her, and trying to keep it all together. She is going to continue to work any muscle she can.
I talked to her about it for a long time last night. I felt as if I had failed her - having to tell her that I was just not finding a way to get her out of the hospital. She's been in the hospital over 100 days, more than a quarter of the year. She is more understanding about this than I am. She amazes me. I know she wants out, to be with her friends, near her cat, in the arms of her family. And she is more understanding about this than I am. I guess in her position you can either be understanding or tie yourself in knots like I am... I keep looking at the clock..hell, at the calendar...and knowing that the longer we have to wait the less effective the alternative treatment may be. That, right there, is hell for me.
Anyway - another regroup. There are still other things that need to happen before I can get her home and treatment and then therapy. And part of that is cleaning up part of the mess from my own life, my poor decisions. Then, at least my own crap won't stand in the way of my helping her.
i'm rambiling. i'm coming out of my skin right now. I'll go ahead and bounce off the walls until I go to sleep tonight, then wake up tomorrow all fresh and see what else can happen tomorrow....
Anyway...got towed to the nearest Ford dealership. Looks like the alternator. But I didn't get to go cuddle with Sara tonight. That's all she and I had planned for tonight. Maybe see if we could catch some TV like we used to.
She's doing really well. I love that smile of hers. That mischevous mind and the jokes she plays on people. What a turd...
So - I had a discharge planning meeting yesterday. Met with the woman who threatened the denial letter, and her boss, and our social worker. They went over what it would even take to bring her home. The manager was trying to scare me, but that doesn't scare me now. What scares me is people's bullshit - like what her employee slung at me for no reason. I did speak my mind to her during the meeting - and then dropped it.
So, anyway, they gave me a huge list of things to worry about. And, I reminded them that although I want nothing more than to bring her home, I'm not stupid. Desire and ability are still pretty far apart. I told them that until they have IN WRITING from me that she is coming home that they are to continue looking for a subacute nursing unit for her, with the goal of her going to inpatient rehab when she can handle it. They expained that the continuing issue is lack of beds, and then that most subacute nursing units are really for elder care. Yeah...like a 19 needs to bunk next to a 91 year old.
I asked them if Kaiser would put her someplace they didn't have a contract with at present, like Kentfield Rehab. They have a stepdown unit for people who aren't ready for the main program. I know it seems like I am all over the place with where she is going, and what to do with her. Honestly, I am. I just want her home. I just want her where I can get her the alternative treatment. But, for every want, there are 5 reasons why it isn't happening yet. Makes you just want to laugh to keep from burstin into tears. I'm pretty much all cried out, though. They come once in a while.
So, on the house front if I had good credit and no dogs I would have a place. But if I had good credit I would just buy a house and who would care if I had dogs. It became a little bit of a moot point yesterday, when I found out some of the physical requirements to bring Sara home on a ventilator. I have to have a gas generator installed in the house. I have to do other improvements to a place. Nobody renting would allow me to make those kinds of modifications to the house. And, my bright idea that I could just bring her here and take over the second floor for just her - nope. Can't do it. Can't have her above the ground floor without an elevator. That'yll never happen in this apartment. They get all pissy if you even ask about doing anything.
The plan - Kaiser is going to try and get her into Kentfield. I am going to work on fixing my credit. She is going to continue to make slow progress and work to get off the vent. Kaiser is going to find an appropriate place for her to be, or she stays in Sacramento. I'm going to keep working and going to see her, and trying to keep it all together. She is going to continue to work any muscle she can.
I talked to her about it for a long time last night. I felt as if I had failed her - having to tell her that I was just not finding a way to get her out of the hospital. She's been in the hospital over 100 days, more than a quarter of the year. She is more understanding about this than I am. She amazes me. I know she wants out, to be with her friends, near her cat, in the arms of her family. And she is more understanding about this than I am. I guess in her position you can either be understanding or tie yourself in knots like I am... I keep looking at the clock..hell, at the calendar...and knowing that the longer we have to wait the less effective the alternative treatment may be. That, right there, is hell for me.
Anyway - another regroup. There are still other things that need to happen before I can get her home and treatment and then therapy. And part of that is cleaning up part of the mess from my own life, my poor decisions. Then, at least my own crap won't stand in the way of my helping her.
i'm rambiling. i'm coming out of my skin right now. I'll go ahead and bounce off the walls until I go to sleep tonight, then wake up tomorrow all fresh and see what else can happen tomorrow....
Wednesday, February 6, 2008
Wait... what?
For those who don't know, Sara drove a 1987 Oldsmobile Custom Cruiser, in this sort of metallic baby blue color. It was a pretty sweet car. It was long, wide, but not very tall. This thing earned the nicknames "Yacht" and "Tank", and Sara even named it "Maria", which she got because Maria is pretty similar to Mar, which is the spanish word for ocean, if I'm not mistaken.
Anywho, back in January (pretty early Jan), mom said she saw another Custom Cruiser in our drivway. Same colour, same model, etc. I didn't believe her. She showed me a picture. I was still in disbelief. Here it was, a car that on her cellphone screen looks exactly like Maria.
Well, I just got home today. I look in the driveway for our complex and I see, in the same spot Sara would park in, the same car that mom saw. She wasn't lying.
Some pictures:
(They're thumbnails. Click them.)
So yeah. Not really relative to anything too horribly important, but still kind of interesting.
-Mike
Anywho, back in January (pretty early Jan), mom said she saw another Custom Cruiser in our drivway. Same colour, same model, etc. I didn't believe her. She showed me a picture. I was still in disbelief. Here it was, a car that on her cellphone screen looks exactly like Maria.
Well, I just got home today. I look in the driveway for our complex and I see, in the same spot Sara would park in, the same car that mom saw. She wasn't lying.
Some pictures:
(They're thumbnails. Click them.)
So yeah. Not really relative to anything too horribly important, but still kind of interesting.
-Mike
We didn't get the house...
I am so bummed...actually in tears. We didn't get the ideal house. There was plenty of room for me to setup a nice treatment room for her and everything. Basically, didn't get it because of my credit and the fact I have dogs. It just sucks. I have the best trained dogs I know, they don't stink, don't tear things up, don't bark excessively. Yeah, my credit is crap. Did that to myself directly and indirectly, but my bad none-the-less. If I had good credit I would be buying a house instead of trying to rent/lease one. I've just got a discharge planning meeting in 3 hours and have now wasted a week on this house and have no place to land. This just delays other treatments more...
Ok...enough self-pity, disappointment and tears. Back onto Craigs list...
Ok...enough self-pity, disappointment and tears. Back onto Craigs list...
Tuesday, February 5, 2008
A few days rest...
I'm sorry if I kept people in suspense with what has been going on. It overwhelmed me pretty hard and I needed to settle my mind for a few days. That's also why no updates in a few days.
Sara is doing great. The nurses on the ward are always saying how amazing she is and how hard headed she is. They are right on both accounts. She continues to slowly do what they said she never would.
Most notably today...they reduced her ventilator pressure support again, by 2 points. That means she is down to 10. She only needs to get to 6 before we can start doing some sponteneous breathing trials (SBT). An SBT is where they basically just pull the vent tubes off her traecheostomy and she breathes room air on her own via the tube. They typically cover the traech with a light cover filter. Then, after a period of time, they remove the inner cannula from her throat, and let the hole close up. I have to tell you...if she can get off the ventilator that would be HUGE. On the vent she only has about 6 years to live - off the vent she can live 40+.
On the discharge front - I have a meeting tomorrow with the discharge planners. Basically, our social worker got the hospital back in line with regards to what we're doing. The MediCAL program does pay the nursing, but they didn't tell me that I had to apply for it - it is not automatic. So I researched everything for that and am doing the application. I also, obviously had to get going on finding a place to live. The other day when all this came to a head I left work and that's all I did. I found the perfect place for us. Single story, plenty of space for a wheelchair to navigate - a large combination living/dining space I can turn into a hospital room and therapy room to accomodate her. Place to put my home office for consulting and working from home. Family room to gather in. Open kitchen. I think it would be the perfect place to bring her home to and help rehabilitate her. It will also be nice to have space for her friends to come by and hang out with her. Her social needs have been barely met, but that is most understandable. I should find out today whether or not I got the house. Cross your fingers.
Otherwise, I have just been working, cleaning the house, and playing air traffic controller. I've gone to see her a couple of times since all this happened - but I missed a few nights. My sweet boyfriend covered for me, and expained to Sara that Mom was getting beat up a bit around the edges and needed to sleep. And that is exactly what I did - came home from work, napped, got up, worked, went to bed. He's been real good about trying to get the positive back in my speak...as my being negative about anything is a pretty good indicator that I am discouraged.
So...moving on, I got to get back to work. Rested, encouraged, able to be there for Sara and Michael...
Daniel is going up to the hospital today to surprise her and hang out on a Tuesday. I can just imagine the big smile...
Sara is doing great. The nurses on the ward are always saying how amazing she is and how hard headed she is. They are right on both accounts. She continues to slowly do what they said she never would.
Most notably today...they reduced her ventilator pressure support again, by 2 points. That means she is down to 10. She only needs to get to 6 before we can start doing some sponteneous breathing trials (SBT). An SBT is where they basically just pull the vent tubes off her traecheostomy and she breathes room air on her own via the tube. They typically cover the traech with a light cover filter. Then, after a period of time, they remove the inner cannula from her throat, and let the hole close up. I have to tell you...if she can get off the ventilator that would be HUGE. On the vent she only has about 6 years to live - off the vent she can live 40+.
On the discharge front - I have a meeting tomorrow with the discharge planners. Basically, our social worker got the hospital back in line with regards to what we're doing. The MediCAL program does pay the nursing, but they didn't tell me that I had to apply for it - it is not automatic. So I researched everything for that and am doing the application. I also, obviously had to get going on finding a place to live. The other day when all this came to a head I left work and that's all I did. I found the perfect place for us. Single story, plenty of space for a wheelchair to navigate - a large combination living/dining space I can turn into a hospital room and therapy room to accomodate her. Place to put my home office for consulting and working from home. Family room to gather in. Open kitchen. I think it would be the perfect place to bring her home to and help rehabilitate her. It will also be nice to have space for her friends to come by and hang out with her. Her social needs have been barely met, but that is most understandable. I should find out today whether or not I got the house. Cross your fingers.
Otherwise, I have just been working, cleaning the house, and playing air traffic controller. I've gone to see her a couple of times since all this happened - but I missed a few nights. My sweet boyfriend covered for me, and expained to Sara that Mom was getting beat up a bit around the edges and needed to sleep. And that is exactly what I did - came home from work, napped, got up, worked, went to bed. He's been real good about trying to get the positive back in my speak...as my being negative about anything is a pretty good indicator that I am discouraged.
So...moving on, I got to get back to work. Rested, encouraged, able to be there for Sara and Michael...
Daniel is going up to the hospital today to surprise her and hang out on a Tuesday. I can just imagine the big smile...
Quick note for peace of mind
I realize that some of you may still be concerned about the long post Kristina made a few days ago regarding the discharge lady threatening to revoke Sara's medical coverage. I would just like to let people know that the issue as been dealt with and is now no longer a threat to Sara's care. Sorry for the suspense.
Sunday, February 3, 2008
Sunday Update 2/3/08
Sara continues to do well. Sara is being as much her self as she can be in her condition, which is quite a bit. Now when she choughs or strains, her hands and arms start to move. It's not voulentary, but at least those nerve connections are being used on a more regular basis again.
I spent much of today's visit cuddled up next to Sara in her hosptial bed, either reading, talking, or sleeping. She also let me swab out her mouth a bit because her breath smelt (ok, so she's not actually breathing out of her mouth, but when she smiles and laughs, some air gets moved around in there)
The only new thing medicly I found out about was information on that rash mentioned a while back. Apparently it is "resolving". I figure that means its going away and is not a threat to anything. But I never did find out exactly what it was. Other then that, nothing new.
~Daniel H.
I spent much of today's visit cuddled up next to Sara in her hosptial bed, either reading, talking, or sleeping. She also let me swab out her mouth a bit because her breath smelt (ok, so she's not actually breathing out of her mouth, but when she smiles and laughs, some air gets moved around in there)
The only new thing medicly I found out about was information on that rash mentioned a while back. Apparently it is "resolving". I figure that means its going away and is not a threat to anything. But I never did find out exactly what it was. Other then that, nothing new.
~Daniel H.
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