We toured a nursing home today. It was a really nice place. They told us the hospital is planning on moving MIL either Wednesday or Thursday. (And I figured Wednesday because who moves into a new facility on Thanksgiving??)
Definately something to be thankful for this year!
Saturday, November 22, 2008
Real Progress!
I went to see MIL last night. Wow, what a difference! She was stronger, her voice was much better (though still quite hoarse), and she was EATING! I couldn't believe it. Since all this began, she hasn't really eaten more than about a tablespoon full of food for a meal. A half a teaspoon of this, a half a teaspoon of that, and she was pretty much full. We'd have to push to get her to eat any more than that. But not the past couple days.
I was shocked to hear Thursday that she ate a small bowl of spaghetti when dh was there. He had been really pushing her to eat more, but even this was far beyond his expectations. Then, last night, when I got there to visit, the nurse called us aside and told us that she had been eating very well. She said she had eaten half her main course at breakfast, all of the side dish. a full drink, and a banana! Woohoo! A Real meal!
They're talking about removing the feeding tube and moving her to a nursing home NEXT WEEK! YES!
I was shocked to hear Thursday that she ate a small bowl of spaghetti when dh was there. He had been really pushing her to eat more, but even this was far beyond his expectations. Then, last night, when I got there to visit, the nurse called us aside and told us that she had been eating very well. She said she had eaten half her main course at breakfast, all of the side dish. a full drink, and a banana! Woohoo! A Real meal!
They're talking about removing the feeding tube and moving her to a nursing home NEXT WEEK! YES!
Thursday, November 20, 2008
Girls Just Wanna Have Fun
http://ping.fm/p/77wKw - I did it! I got my nails done!
Gee, that was fun! I should have done this a long time ago.
I took ds with me. He sat by himself for a while, doing homework, then he
got bored and came to socialize. He found the activities rather
fascinating, so I involved him. The artist had done up a few samples of
puzzle piece nails, to see which I liked best. Instead, I let ds pick. He
also got to pick the colors, and had a few other chances for artistic input.
He seemed to get a big kick out of the fact that his opinion was taken so
seriously that I would paint it on myself. I was glad he came along. He
could have gone with Dad, but we've been trying to eliminate hospital time,
so things can be more positive for ds. He's really struggling with spending
so much time there, and acting up in school because of it. Going with Mom
to the beauty shop wasn't the same as staying home, but it sure beats a
hospital lobby. We had a good time. He liked helping me choose designs.
He did a good job! We both liked the same designs, but our first choice
wouldn't have worked well. I could have gotten the Autism Awareness ribbon
painted on, but for that I would have needed to go to a longer nail length,
to be able to use a design that big, and I didn't want to go that long. I
do still have to type for a living, so best to go a bit more conservative.
So we went with our 2nd choice, a stripe of puzzle pieces. Ds picked the
colors of the puzzle pieces, too.
Before I went into the shop, I made sure I curled my hair (my hairstylist
works there too, and I didn't want her to think I didn't take care of her
handiwork), and I wore makeup. I almost went further and wore jewelry,
necklaces and earrings, but thought better of it. I didn't want to have to
deal with removing it, and damaging the too freshly painted nails. I'm glad
I held off on that one. Tomorrow will be soon enough for that.
I feared I may have done a poor job getting 'gussied up' this morning,
because when I first arrived at work, with curled hair and makeup (a rare
occurrence), nobody seemed to notice.at first. (I didn't take into account
that I arrived later in the morning, and they had all been there since
before sunrise.) But then my co-worker, the one that suggested that I go to
that hairstylist to begin with, spoke up and asked me what I had done
differently with my hair, that it looked really nice like that, and went on
to point out the things she really liked about the way I'd styled it. I was
so relieved! I could be seen by the hairstylist without shame, lol.
So I guess I'm all dressed up and no place to go. That's okay. I feel
happy, and taken care of, and peaceful. And I have that Cyndi Lauper song
dancing in my brain. (I do like that song.) I've been calling my nails "Ds
Nails" (insert name in place of ds), and he gets a giggle out of that. So
he feels happy, too. It was a good night.
Oh, and before you think that poor dh got forgotten here, spending the night
in the hospital while I had fun, I did inform him this morning that he's
getting tickets to see a hockey game. His fun time will come! (Ds got
Chucky Cheese, too.) Everyone needs to have a little fun.
Gee, that was fun! I should have done this a long time ago.
I took ds with me. He sat by himself for a while, doing homework, then he
got bored and came to socialize. He found the activities rather
fascinating, so I involved him. The artist had done up a few samples of
puzzle piece nails, to see which I liked best. Instead, I let ds pick. He
also got to pick the colors, and had a few other chances for artistic input.
He seemed to get a big kick out of the fact that his opinion was taken so
seriously that I would paint it on myself. I was glad he came along. He
could have gone with Dad, but we've been trying to eliminate hospital time,
so things can be more positive for ds. He's really struggling with spending
so much time there, and acting up in school because of it. Going with Mom
to the beauty shop wasn't the same as staying home, but it sure beats a
hospital lobby. We had a good time. He liked helping me choose designs.
He did a good job! We both liked the same designs, but our first choice
wouldn't have worked well. I could have gotten the Autism Awareness ribbon
painted on, but for that I would have needed to go to a longer nail length,
to be able to use a design that big, and I didn't want to go that long. I
do still have to type for a living, so best to go a bit more conservative.
So we went with our 2nd choice, a stripe of puzzle pieces. Ds picked the
colors of the puzzle pieces, too.
Before I went into the shop, I made sure I curled my hair (my hairstylist
works there too, and I didn't want her to think I didn't take care of her
handiwork), and I wore makeup. I almost went further and wore jewelry,
necklaces and earrings, but thought better of it. I didn't want to have to
deal with removing it, and damaging the too freshly painted nails. I'm glad
I held off on that one. Tomorrow will be soon enough for that.
I feared I may have done a poor job getting 'gussied up' this morning,
because when I first arrived at work, with curled hair and makeup (a rare
occurrence), nobody seemed to notice.at first. (I didn't take into account
that I arrived later in the morning, and they had all been there since
before sunrise.) But then my co-worker, the one that suggested that I go to
that hairstylist to begin with, spoke up and asked me what I had done
differently with my hair, that it looked really nice like that, and went on
to point out the things she really liked about the way I'd styled it. I was
so relieved! I could be seen by the hairstylist without shame, lol.
So I guess I'm all dressed up and no place to go. That's okay. I feel
happy, and taken care of, and peaceful. And I have that Cyndi Lauper song
dancing in my brain. (I do like that song.) I've been calling my nails "Ds
Nails" (insert name in place of ds), and he gets a giggle out of that. So
he feels happy, too. It was a good night.
Oh, and before you think that poor dh got forgotten here, spending the night
in the hospital while I had fun, I did inform him this morning that he's
getting tickets to see a hockey game. His fun time will come! (Ds got
Chucky Cheese, too.) Everyone needs to have a little fun.
Saturday, November 15, 2008
Hospitals and Autism Don't Mix
Through all the medical crisis, poor ds has been dragged to the hospital on a daily basis. We've tried to accomodate his needs as much as humanly possible, but the poor kid has really struggled.
We made sure he had access to a tv, video games, and chances to play and have fun, and visit with kids (cousins and visiting friends). And time to do homework where it is quiet and spacious.
We tried to keep to a routine, and make sure he got up and went to bed at the same times, did homework at the same time, ate at the same times, all that kind of thing. I tried to allow him kid-time, to be free of the restrictions of the hospital environment. He was sheltered from the hospital talk.
But it's just not the same. We all know that. And ds suffered for it. He is frustrated, missing his normal life. (We all are.)
He started having meltdowns in school. And the school has no sympathy for him. We ended up late at the hospital one day, when MIL was not expected to survive the night, and we didn't get to homework. He actually did part of his assignment, but not all. I wrote a note to the school, explaining that we were there late, didn't get to do homework, that MIL is in critical condition, etc. He turned the assignment in one day late. So you know what they did? They still dropped his grade one letter grade for being late. It went from an A to a B, and it was written right on the paper that it was marked down for being turned in late. Which is what they do for any kid who turns in homework late. They have absolutely NO consideration to his circumstances. What a**h*les. No compassion at all. Ds was FURIOUS. (So was I.) And he crumpled up the paper and threw it on the ground. Can't say that I blame him. I felt like doing the same thing.
He had several meltdowns after that. Not surprising. When you're dealing with people who have no compassion to begin with, they aren't going to be supportive of autism either. I received phone calls to come and get him because he climbed under a table. (You know, why the hell can't they just LEAVE HIM ALONE when he does that? He'll come out in a few minutes. Instead they all throw fits, try to force him out, and make the situation worse.) Poor kid.
So we made some changes. He's rarely at the hospital anymore, which means I'm rarely at the hospital too. Dh feels the need to be there all the time, and I can understand and relate to that. But it's just not good for ds.
I had an early day off of work, so I spent time at the hospital while ds went swimming with his daycare. I wasn't able to pick him up until a certain time, so I stayed at the hospital. It gave me some good visiting time, and gave ds time to play. Or so I thought.
Turns out, playing at the daycare was a nightmare. The place just doesn't 'get' autism, and they don't accomodate his needs at all. I'm so sick of this. Ds ended up being bullied by the kids, punished by the adults, and spent all day just miserable. The only thing he did enjoy was the swim time, so at least he got something positive out of it. But I just have lost all hope where daycares are concerned. None listen, none care, none are any good for him. It sucks.
But since we severly restricted ds's hospital time, he has really bounced back. He's happier, fewer meltdowns, and life is much less stressful for all. Since I can't spend as much time at the hospital, I've spent time trying to cook real food for the rest of the family. We're so sick of restaurant and carry out, we could scream. So I made batches of chili and beef stew, and sent some to FIL. It's good to eat real food for a change.
But I'm so tired of the school and the daycares. I hate dealing with these places. They tell you they'll be supportive of your child with autism, but they aren't. They won't listen to anything you tell them. They don't want to learn. They'll try some crap that their own books and advisors suggest, but they won't put any real effort into it. They don't want to have to deal with it. The feeling is mutual. I don't want to deal with them either.
You can tell them your child has sensory issues, and loud noises, touch, and stimulating environments can be disturbing and frustrating to him, but then they get angry because he melts down during a fire alarm. They say they'll provide a one-on-one aide, yet the person is always missing when dh has a meltdown or takes off - she's used like a teacher's aide, instead of a student's aide. And they get mad that he melts down in the gym during a game of dodgeball. Idiots. We tell the daycare that he gets very upset if you punish him unjustly, punish him for something he didn't do, so the next time he is a victim of being bullied, they punish BOTH kids. And don't understand why my son locks himself in the bathroom because of it. Idiots. And the school tells us they are so sorry to hear of all that we're dealing with at the hospital, and if there's anything they can do to help ds with it, and then they dock him a grade for turning in one assignment one day late. A**h*les. I tell the daycare that he has autism and sensory issues, and when ds gets out of a warm swimming pool into a freezing cold locker room, they get ANGRY because he tells them he is too cold to get dressed. I looked at the caregiver and started to explain that he has autism and sensory issues, and the guy cuts me off and yells, "YEAH, I HEARD!"
A**h*le.
Sorry, I'm very frustrated with all of this, my patience and strength are stretched too thin.
I wish I could find a school, or even a single teacher, that can deal with my son with patience and understanding. I wish I could find a daycare that doesn't punish him for his differences.
The funny thing is, ds is pretty easy to deal with at home. We've got things running smoothly here. He's happy and productive and successful in his own environment. And in most any other environment, with the obvious exceptions of school and daycare. Yeah, I know, those are significant exceptions. But what do I do? I've taken him to psychiatrists, psychologists, behavior specialists, and therapists. They all tell me the SAME thing! They all tell me, "They need to provide your son with support. They aren't supporting his needs at all."
But they claim they are. They provide all kinds of supports. (At least the school does.) Of course, they admit that they don't do it like they're supposed to. They don't show him his behavior chart several times a day like they are supposed to. Funny, when they DID, his behavior improved, and when they didn't, his behavior worsened. But they insist that it doesn't really work anyway. Go figure. Oh, and they give him an additional table and a chair. So? He doesn't really need that, and we never asked for that. That was something they believed worked because that's what the school told them to do. We keep asking for patience. They show him NONE. We ask for understanding, they accuse him of being lazy. We ask them for suggestions on how we can help, they tell us to take away his video games. We did that and his behavior went ballistic. Video games are his obsession, his special interest, his perseveration, his lifeline. The therapists all challenged this. They said it was the worst thing we could do, and found the school's reasoning on this to be very misguided and uninformed. We ask the school to not touch ds when he is upset. They respond by dragging him out of the classroom. We ask them to allow him time to regroup, they insist he behave NOW. The daycare asks us for information about how to deal with our son's autism, then doesn't share that information with the other caregivers that work with him.
I suspect that the biggest problem we have is that ds is so high functioning, and often appears to be NT, that everyone expect him to *BE* NT. Isn't that the irony? If he were non-verbal for example, they would start out with the understanding that he's different and is entitled to accomodation. But since he looks NT, and often appears to behave NT, therefore he better act NT or he'll be punished.
I'm so tired of all this. I wish I could just pull him out of school and homeschool him. I can't afford to do this though. Especially now. I wish I could yank him out of daycares. Obviously I can't do that. But none can work with autism. Not one.
It feels hopeless at times. Not living with autism! That's the easy part. It's dealing with the outsiders. The school is hell. The daycare is hell. Home and family are the haven.
I know ds will be fine. He'll get out of this hell of school and daycare, and he'll find his niche. He'll be productive and he'll be happy. Really happy. He's very easy going, as long as you understand him and have patience and let him be himself. He doesn't ask for much really. And if you let go of the idea of treating him like you were treated as a child, he will thrive. Drop your conceptions of "lazy" and "spoiled," and you'll find that my son is incredibly sensitive, generous and tenatious. Let him be "lazy" for ten minutes, and watch him work harder than all the other kids combined for the next two hours. "Spoil" him by treating him with respect, just as much respect as your OWN needs deserve, by letting him do things his own way, and you'll find that when you respect him and his needs, he will also respect you and your needs, and he'll be very happy to work *with* you and not against you. Incredibly easy. But obviously too much to ask of a school. The sad part is, they would be shocked at how simple and easy this is, and how little they would have to do, and how much stress and chaos it would remove from their school.
I'm so frustrated. Not a 'give up' kind of frustrated. Just irritated that there isn't any place out there to help us. No school. No daycare.
No, I guess there is one place - the autism school. The only drawback there is that the school is tiny, and far more restrictive an enviroment than he needs (most restrictive as opposed to least restrictive), and they don't believe he belongs there. They understand our unusual circumtances though, and have offered to help get him in if we want to go that route. It doesn't seem like the ideal place for him for a lot of reasons. But neither does his current school. It doesn't appear to be any better for our son, but it doesn't appear to be worse, either. Can't we take a step upwards, instead of down or laterally?
I don't know what to do. All I need is that magic winning lottery ticket, and I'd open my own school. I'd hire people who are patient and kind. I'd hire people that love learning, and love teaching, and think learning ought to be fun. And I'd welcome the aspies who don't fit into the NT schools yet also don't fit into the autism schools, and give a safe haven to the kids who struggle against so much.
I can dream, can't I? :)
We made sure he had access to a tv, video games, and chances to play and have fun, and visit with kids (cousins and visiting friends). And time to do homework where it is quiet and spacious.
We tried to keep to a routine, and make sure he got up and went to bed at the same times, did homework at the same time, ate at the same times, all that kind of thing. I tried to allow him kid-time, to be free of the restrictions of the hospital environment. He was sheltered from the hospital talk.
But it's just not the same. We all know that. And ds suffered for it. He is frustrated, missing his normal life. (We all are.)
He started having meltdowns in school. And the school has no sympathy for him. We ended up late at the hospital one day, when MIL was not expected to survive the night, and we didn't get to homework. He actually did part of his assignment, but not all. I wrote a note to the school, explaining that we were there late, didn't get to do homework, that MIL is in critical condition, etc. He turned the assignment in one day late. So you know what they did? They still dropped his grade one letter grade for being late. It went from an A to a B, and it was written right on the paper that it was marked down for being turned in late. Which is what they do for any kid who turns in homework late. They have absolutely NO consideration to his circumstances. What a**h*les. No compassion at all. Ds was FURIOUS. (So was I.) And he crumpled up the paper and threw it on the ground. Can't say that I blame him. I felt like doing the same thing.
He had several meltdowns after that. Not surprising. When you're dealing with people who have no compassion to begin with, they aren't going to be supportive of autism either. I received phone calls to come and get him because he climbed under a table. (You know, why the hell can't they just LEAVE HIM ALONE when he does that? He'll come out in a few minutes. Instead they all throw fits, try to force him out, and make the situation worse.) Poor kid.
So we made some changes. He's rarely at the hospital anymore, which means I'm rarely at the hospital too. Dh feels the need to be there all the time, and I can understand and relate to that. But it's just not good for ds.
I had an early day off of work, so I spent time at the hospital while ds went swimming with his daycare. I wasn't able to pick him up until a certain time, so I stayed at the hospital. It gave me some good visiting time, and gave ds time to play. Or so I thought.
Turns out, playing at the daycare was a nightmare. The place just doesn't 'get' autism, and they don't accomodate his needs at all. I'm so sick of this. Ds ended up being bullied by the kids, punished by the adults, and spent all day just miserable. The only thing he did enjoy was the swim time, so at least he got something positive out of it. But I just have lost all hope where daycares are concerned. None listen, none care, none are any good for him. It sucks.
But since we severly restricted ds's hospital time, he has really bounced back. He's happier, fewer meltdowns, and life is much less stressful for all. Since I can't spend as much time at the hospital, I've spent time trying to cook real food for the rest of the family. We're so sick of restaurant and carry out, we could scream. So I made batches of chili and beef stew, and sent some to FIL. It's good to eat real food for a change.
But I'm so tired of the school and the daycares. I hate dealing with these places. They tell you they'll be supportive of your child with autism, but they aren't. They won't listen to anything you tell them. They don't want to learn. They'll try some crap that their own books and advisors suggest, but they won't put any real effort into it. They don't want to have to deal with it. The feeling is mutual. I don't want to deal with them either.
You can tell them your child has sensory issues, and loud noises, touch, and stimulating environments can be disturbing and frustrating to him, but then they get angry because he melts down during a fire alarm. They say they'll provide a one-on-one aide, yet the person is always missing when dh has a meltdown or takes off - she's used like a teacher's aide, instead of a student's aide. And they get mad that he melts down in the gym during a game of dodgeball. Idiots. We tell the daycare that he gets very upset if you punish him unjustly, punish him for something he didn't do, so the next time he is a victim of being bullied, they punish BOTH kids. And don't understand why my son locks himself in the bathroom because of it. Idiots. And the school tells us they are so sorry to hear of all that we're dealing with at the hospital, and if there's anything they can do to help ds with it, and then they dock him a grade for turning in one assignment one day late. A**h*les. I tell the daycare that he has autism and sensory issues, and when ds gets out of a warm swimming pool into a freezing cold locker room, they get ANGRY because he tells them he is too cold to get dressed. I looked at the caregiver and started to explain that he has autism and sensory issues, and the guy cuts me off and yells, "YEAH, I HEARD!"
A**h*le.
Sorry, I'm very frustrated with all of this, my patience and strength are stretched too thin.
I wish I could find a school, or even a single teacher, that can deal with my son with patience and understanding. I wish I could find a daycare that doesn't punish him for his differences.
The funny thing is, ds is pretty easy to deal with at home. We've got things running smoothly here. He's happy and productive and successful in his own environment. And in most any other environment, with the obvious exceptions of school and daycare. Yeah, I know, those are significant exceptions. But what do I do? I've taken him to psychiatrists, psychologists, behavior specialists, and therapists. They all tell me the SAME thing! They all tell me, "They need to provide your son with support. They aren't supporting his needs at all."
But they claim they are. They provide all kinds of supports. (At least the school does.) Of course, they admit that they don't do it like they're supposed to. They don't show him his behavior chart several times a day like they are supposed to. Funny, when they DID, his behavior improved, and when they didn't, his behavior worsened. But they insist that it doesn't really work anyway. Go figure. Oh, and they give him an additional table and a chair. So? He doesn't really need that, and we never asked for that. That was something they believed worked because that's what the school told them to do. We keep asking for patience. They show him NONE. We ask for understanding, they accuse him of being lazy. We ask them for suggestions on how we can help, they tell us to take away his video games. We did that and his behavior went ballistic. Video games are his obsession, his special interest, his perseveration, his lifeline. The therapists all challenged this. They said it was the worst thing we could do, and found the school's reasoning on this to be very misguided and uninformed. We ask the school to not touch ds when he is upset. They respond by dragging him out of the classroom. We ask them to allow him time to regroup, they insist he behave NOW. The daycare asks us for information about how to deal with our son's autism, then doesn't share that information with the other caregivers that work with him.
I suspect that the biggest problem we have is that ds is so high functioning, and often appears to be NT, that everyone expect him to *BE* NT. Isn't that the irony? If he were non-verbal for example, they would start out with the understanding that he's different and is entitled to accomodation. But since he looks NT, and often appears to behave NT, therefore he better act NT or he'll be punished.
I'm so tired of all this. I wish I could just pull him out of school and homeschool him. I can't afford to do this though. Especially now. I wish I could yank him out of daycares. Obviously I can't do that. But none can work with autism. Not one.
It feels hopeless at times. Not living with autism! That's the easy part. It's dealing with the outsiders. The school is hell. The daycare is hell. Home and family are the haven.
I know ds will be fine. He'll get out of this hell of school and daycare, and he'll find his niche. He'll be productive and he'll be happy. Really happy. He's very easy going, as long as you understand him and have patience and let him be himself. He doesn't ask for much really. And if you let go of the idea of treating him like you were treated as a child, he will thrive. Drop your conceptions of "lazy" and "spoiled," and you'll find that my son is incredibly sensitive, generous and tenatious. Let him be "lazy" for ten minutes, and watch him work harder than all the other kids combined for the next two hours. "Spoil" him by treating him with respect, just as much respect as your OWN needs deserve, by letting him do things his own way, and you'll find that when you respect him and his needs, he will also respect you and your needs, and he'll be very happy to work *with* you and not against you. Incredibly easy. But obviously too much to ask of a school. The sad part is, they would be shocked at how simple and easy this is, and how little they would have to do, and how much stress and chaos it would remove from their school.
I'm so frustrated. Not a 'give up' kind of frustrated. Just irritated that there isn't any place out there to help us. No school. No daycare.
No, I guess there is one place - the autism school. The only drawback there is that the school is tiny, and far more restrictive an enviroment than he needs (most restrictive as opposed to least restrictive), and they don't believe he belongs there. They understand our unusual circumtances though, and have offered to help get him in if we want to go that route. It doesn't seem like the ideal place for him for a lot of reasons. But neither does his current school. It doesn't appear to be any better for our son, but it doesn't appear to be worse, either. Can't we take a step upwards, instead of down or laterally?
I don't know what to do. All I need is that magic winning lottery ticket, and I'd open my own school. I'd hire people who are patient and kind. I'd hire people that love learning, and love teaching, and think learning ought to be fun. And I'd welcome the aspies who don't fit into the NT schools yet also don't fit into the autism schools, and give a safe haven to the kids who struggle against so much.
I can dream, can't I? :)
Day 38
Wow, has it been that long?
MIL has been in the hospital 38 days now. A lot has happened since she was first admitted. We thought we were going to lose her a few times.
I thought I'd give you an update, especially since things have improved greatly. She was moved out of intensive care into a normal room, though on the same wing as the intensive care unit. I supposed that's so they can zip her right back if she takes a downturn. She is off the respirator. She is off critical condition. She is eating, which is fabulous, but unfortunately it isn't enough to keep a bird alive. So far, they still have the feeding tube down her nose. There was talk of removing it and surgically implanting a tube in her side, but they are holding off on that, to give her a chance to eat on her own, which would be preferable. She needs to be eating well on her own, or to have the tube in her side, before she can be released from the hospital. They might remove the nose tube in the next few days, just to see if that increases her appetite. Not sure on that point, though.
She's breathing on her own, though she gets nebulizer treatments every four hours. I'm not sure why this is happening. I'm not sure why she can't breathe well. I know for a while they said that the colitis pushed everything upwards, pushing into her lungs, and that pressure make it hard to breathe. But the colitis is under control now. So why hasn't this greatly improved?
She can only speak in a raspy whisper. That's better than the almost inaudible whisper. I don't understand why this hasn't improved either. I suppose the feeding tube doesn't help. Maybe that will improve as the tube is removed?
She tested negative for c. diff.!! That was great news. They still have us gown up, though. It's a precautionary measure, since her room can still be contaminated. That's okay. It's just good to know she is past that. That is one nasty illness.
They started her again on blood thinners last night. This scares us. She started to bleed the last time they did this, and there is a good chance it could happen again. They are trying a different blood thinner this time. They say they are going to watch her carefully, but we have found that each nurse's caseload is so huge, watching carefully is an impossibility. Frightening. She could bleed out on the blood thinners, and it could kill her. But they need to do this, due to the blood clot in her shoulder. If that isn't dealt with, that could kill her just as easily. Talk about being between a rock and a hard place...
We have made arrangements to have her transfered to a nursing home/rehabilitation facility when she is well enough to leave the hospital. The hospital staff makes it sound like this is in the near future, maybe as soon as next week, but I can't see that happening. She's barely able to eat, and even then, it's such a tiny amount that a baby couldn't survive on that. It's nice to know that they think it could be soon. I just don't see it happening THAT soon.
FIL is making plans for MIL to come home. He wants to have a contractor revamp the bathroom so that it could accomodate a wheelchair, or a walker. Hm. This seems highly optimistic to me. If there isn't some significant improvement soon, I don't see her getting to the point where she can survive outside of a medical facility. She can't take care of herself at all right now, and my FIL isn't able to take care of her like this either. She can't walk, barely talks, can't go to the bathroom on her own, can't bathe herself, can't hardly feed herself. How can she go home?
I know there could be vast improvement in rehab. But realistically, we're probably looking at an assisted living facility, at the very least. I know it could be possible, if she works hard at it, to make it back home again and have in-home assistance. But I don't know if she has that much fight left in her. I'm just not seeing it at the moment.
On the other hand, she has survived, which is far better than the hospital's expectations, so who knows? I guess it's time to grab onto a little faith, and see where it leads us.
MIL has been in the hospital 38 days now. A lot has happened since she was first admitted. We thought we were going to lose her a few times.
I thought I'd give you an update, especially since things have improved greatly. She was moved out of intensive care into a normal room, though on the same wing as the intensive care unit. I supposed that's so they can zip her right back if she takes a downturn. She is off the respirator. She is off critical condition. She is eating, which is fabulous, but unfortunately it isn't enough to keep a bird alive. So far, they still have the feeding tube down her nose. There was talk of removing it and surgically implanting a tube in her side, but they are holding off on that, to give her a chance to eat on her own, which would be preferable. She needs to be eating well on her own, or to have the tube in her side, before she can be released from the hospital. They might remove the nose tube in the next few days, just to see if that increases her appetite. Not sure on that point, though.
She's breathing on her own, though she gets nebulizer treatments every four hours. I'm not sure why this is happening. I'm not sure why she can't breathe well. I know for a while they said that the colitis pushed everything upwards, pushing into her lungs, and that pressure make it hard to breathe. But the colitis is under control now. So why hasn't this greatly improved?
She can only speak in a raspy whisper. That's better than the almost inaudible whisper. I don't understand why this hasn't improved either. I suppose the feeding tube doesn't help. Maybe that will improve as the tube is removed?
She tested negative for c. diff.!! That was great news. They still have us gown up, though. It's a precautionary measure, since her room can still be contaminated. That's okay. It's just good to know she is past that. That is one nasty illness.
They started her again on blood thinners last night. This scares us. She started to bleed the last time they did this, and there is a good chance it could happen again. They are trying a different blood thinner this time. They say they are going to watch her carefully, but we have found that each nurse's caseload is so huge, watching carefully is an impossibility. Frightening. She could bleed out on the blood thinners, and it could kill her. But they need to do this, due to the blood clot in her shoulder. If that isn't dealt with, that could kill her just as easily. Talk about being between a rock and a hard place...
We have made arrangements to have her transfered to a nursing home/rehabilitation facility when she is well enough to leave the hospital. The hospital staff makes it sound like this is in the near future, maybe as soon as next week, but I can't see that happening. She's barely able to eat, and even then, it's such a tiny amount that a baby couldn't survive on that. It's nice to know that they think it could be soon. I just don't see it happening THAT soon.
FIL is making plans for MIL to come home. He wants to have a contractor revamp the bathroom so that it could accomodate a wheelchair, or a walker. Hm. This seems highly optimistic to me. If there isn't some significant improvement soon, I don't see her getting to the point where she can survive outside of a medical facility. She can't take care of herself at all right now, and my FIL isn't able to take care of her like this either. She can't walk, barely talks, can't go to the bathroom on her own, can't bathe herself, can't hardly feed herself. How can she go home?
I know there could be vast improvement in rehab. But realistically, we're probably looking at an assisted living facility, at the very least. I know it could be possible, if she works hard at it, to make it back home again and have in-home assistance. But I don't know if she has that much fight left in her. I'm just not seeing it at the moment.
On the other hand, she has survived, which is far better than the hospital's expectations, so who knows? I guess it's time to grab onto a little faith, and see where it leads us.
Monday, November 10, 2008
Saturday, November 1, 2008
In The Dark
MIL is resting. Really deep sleep. If you wake her up, she is confused, and thinks it's 1960, and that she's at home. No one knows for sure whether this is bad or not. The doc suspects that she is just so deeply asleep, that she's not fully waking up. I hope he's right.
They see no signs of neurological damage so far. That's good. We aren't certain yet that this is off the table. They are running more tests today, and I guess that will tell us more. They didn't want to run all the tests yesterday because they wanted her to rest.
We're told that she will probably be on the ventilator at least a week. It will take about three days for her to get some really good rest, without fighting for breath. After that, it sounds like they want to wean her off the ventilator, so that she'll be able to transition to breathing on her own.
Again, I have to wonder why all the vitals seem to be doing pretty well, and everything else seems to be going to hell in a handbucket. The infection seems to be under control, because the white cell count is in the normal range. The kidneys seem to be doing reasonably well, not perfect, but not bad enough to require dialysis or anything significant. Blood sugar, blood pressure, pulse, all in the normal range. (I don't know much about the c. diff., so I don't know if that's under control or not, though I suspect the white cell count would be high if it were not under control...?) Even her spirits were better.
So why does everything still seem to be getting worse? Is it just that her body is giving out? At this point, I'm beginning to wonder if she'll be able to ever go home again. I can't imagine, even if she makes it, that she would be able to return to an independent life. I would be surprised if she didn't end up in a nursing home, or something like that, for the rest of her life. If she can pull through, that is.
I hope I'm mistaken. I don't have a lot of experience with any of this. My expectations are merely guesses, based on what I'm seeing in the throws of an illness.
The family is all coming back again. Some had left for a few days to deal with their home issues. Now they are all coming back in full force.
I'm worn out. Dh is sick. He's so run down, I don't know how he keeps on his feet. He slept in this morning (to 9, if you can call that sleeping in - but it's better than 5 am). Ds is a happy camper after Halloween. It does my heart good to see him happy. And I'm relieved that his school project is behind us for now. I hate worrying about that and dealing with all the medical issues and a holiday and work, all at the same time. It's just too much.
I wish we had some solid answers. I guess there just aren't any.
They see no signs of neurological damage so far. That's good. We aren't certain yet that this is off the table. They are running more tests today, and I guess that will tell us more. They didn't want to run all the tests yesterday because they wanted her to rest.
We're told that she will probably be on the ventilator at least a week. It will take about three days for her to get some really good rest, without fighting for breath. After that, it sounds like they want to wean her off the ventilator, so that she'll be able to transition to breathing on her own.
Again, I have to wonder why all the vitals seem to be doing pretty well, and everything else seems to be going to hell in a handbucket. The infection seems to be under control, because the white cell count is in the normal range. The kidneys seem to be doing reasonably well, not perfect, but not bad enough to require dialysis or anything significant. Blood sugar, blood pressure, pulse, all in the normal range. (I don't know much about the c. diff., so I don't know if that's under control or not, though I suspect the white cell count would be high if it were not under control...?) Even her spirits were better.
So why does everything still seem to be getting worse? Is it just that her body is giving out? At this point, I'm beginning to wonder if she'll be able to ever go home again. I can't imagine, even if she makes it, that she would be able to return to an independent life. I would be surprised if she didn't end up in a nursing home, or something like that, for the rest of her life. If she can pull through, that is.
I hope I'm mistaken. I don't have a lot of experience with any of this. My expectations are merely guesses, based on what I'm seeing in the throws of an illness.
The family is all coming back again. Some had left for a few days to deal with their home issues. Now they are all coming back in full force.
I'm worn out. Dh is sick. He's so run down, I don't know how he keeps on his feet. He slept in this morning (to 9, if you can call that sleeping in - but it's better than 5 am). Ds is a happy camper after Halloween. It does my heart good to see him happy. And I'm relieved that his school project is behind us for now. I hate worrying about that and dealing with all the medical issues and a holiday and work, all at the same time. It's just too much.
I wish we had some solid answers. I guess there just aren't any.
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