That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food. Just now, as I started to write, we had a little breakthrough. Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites. She actually asked for it when we thought she was done and took it away. It's the first she's really eaten without being seriously urged. This morning, she ate a slice of onion---one of her favorite foods, and she's had a few slivers of salami. But that's about it for today. That isn't enough. She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry. I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.
Otherwise, she is mostly okay. Today is the last day of her antibiotics---day 14. It's hard to believe this is day 15 overall in the hospital. In today's drive-through hospital stay world, that's a long, long time. She is walking with a lot more ease. She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.
That's the physical part. As Janey gets feeling a bit better, it's getting harder to keep her happy here. Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything. Now, she is getting bored, I think. Thank goodness for the iPad. For years, we resisted letting her use the iPad as an alternative TV. The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn! I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too. Well, of course that is no longer the case. We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock. She loves the control, so she can watch as little or as much of a show as she wants. I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.
I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed. But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.
Thank you for reading, for your love and thoughts and prayers and support! We have needed and will be needing it badly!
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label boarders. Show all posts
Showing posts with label boarders. Show all posts
Thursday, June 11, 2015
Saturday, November 22, 2014
Our Experience with the Mental Health Boarding Crisis
If you are one of the regular readers of this blog, you are probably thinking "ANOTHER post? I am not up to ANOTHER post!" Please feel free to take a reading break! I will not be hurt! I just feel so compelled to get down the details of this story before they leave my head.
So---what is boarding? In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home. There are far too few psychiatric beds in this country, most especially for children. So children wind up boarding at hospitals. I was often given two weeks as a common amount of time to be boarding. There is an article here especially about this crisis in Massachusetts, but it exists all over the country.
I think I'd vaguely heard of boarding before last week, but didn't really get it. I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.
In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis. You, or your school, have no idea how to handle them. They are becoming unsafe to themselves or to others. In the crisis, you take them to the ER. The ER assesses them, and somehow is able to help them, within the time frames you'd expect for other medical crises---a few hours to a few days. It's not fun, but it's in line with something like appendicitis or a bad case of the flu.
I'll use Janey's case to illustrate the reality. She had been having a tough week. Things escalated Friday at school. The school rightly called an ambulance. Janey was taken to the ER about 1:30 pm. Her vitals were checked, we told our basic story. We finally saw a psychiatrist about 5 pm. The psychiatrist determined that Janey needed to get more help. She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.
I've written about the time in the ER. There were no spaces available. So, after a 24 hour hold, Janey was admitted to Children's Hospital. She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants. The nurses there were not psychiatric nurses. The room was not set up for a psychiatric patient. They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer. And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey. The hospital checked three times a day for a spot. On Thursday, around 8 pm, we finally left by ambulance, after 6 days.
Those are the bare facts. The reality was, well, hell. Janey was not allowed to leave her room. I understand the reason for that. She wasn't stable, and she could hurt other patients. But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least. Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times. These people are called "sitters" In theory, that is a good idea. It's a second set of hands, someone else to keep an eye on the child. In practice, well, it makes things a lot tougher, actually. The sitters varied. Most were well-meaning, but mostly they did what the name says---they sat. They sat in a chair and did nothing. They didn't play with Janey or help in any way. We were not supposed to leave Janey alone with them, so we still needed to be in the room with her. They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up. They became one more person in the room to protect from being hurt. We were unable to talk to each other with any candor. I felt I had to make conversation at least a little with the sitters to not be totally rude. They were an added source of stress for certain, although I know they didn't mean to be.
When Janey's behavior escalated in the hospital, we tried to handle it ourselves. If she got more upset, which probably happened about 10 times while there, we called the nurse. That was the procedure. The nurse could do little to help. She would call the psychiatrist on call, or what was called the behavioral team. The only real response they had was to give Janey more medication. There wasn't much else that could be done in the confines of a hospital room. A few days, Janey wound up overmedicated and groggy.
Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding? I have a few ideas. The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room. Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help. With sitters, either train them better or make them optional. Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time. Give the parents an hour of respite now and then. I was lucky to have my friend Maryellen help me several days with Janey. Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese! In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us. Seeing her friendly kind face quite a few times during our stay was wonderful. She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats. I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.
The United States is one of the richest countries on Earth. It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues. Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace. I hate to be that blunt, but that is the reality. One child having to "board" ever is one child too many.
So---what is boarding? In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home. There are far too few psychiatric beds in this country, most especially for children. So children wind up boarding at hospitals. I was often given two weeks as a common amount of time to be boarding. There is an article here especially about this crisis in Massachusetts, but it exists all over the country.
I think I'd vaguely heard of boarding before last week, but didn't really get it. I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.
In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis. You, or your school, have no idea how to handle them. They are becoming unsafe to themselves or to others. In the crisis, you take them to the ER. The ER assesses them, and somehow is able to help them, within the time frames you'd expect for other medical crises---a few hours to a few days. It's not fun, but it's in line with something like appendicitis or a bad case of the flu.
I'll use Janey's case to illustrate the reality. She had been having a tough week. Things escalated Friday at school. The school rightly called an ambulance. Janey was taken to the ER about 1:30 pm. Her vitals were checked, we told our basic story. We finally saw a psychiatrist about 5 pm. The psychiatrist determined that Janey needed to get more help. She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.
I've written about the time in the ER. There were no spaces available. So, after a 24 hour hold, Janey was admitted to Children's Hospital. She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants. The nurses there were not psychiatric nurses. The room was not set up for a psychiatric patient. They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer. And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey. The hospital checked three times a day for a spot. On Thursday, around 8 pm, we finally left by ambulance, after 6 days.
Those are the bare facts. The reality was, well, hell. Janey was not allowed to leave her room. I understand the reason for that. She wasn't stable, and she could hurt other patients. But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least. Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times. These people are called "sitters" In theory, that is a good idea. It's a second set of hands, someone else to keep an eye on the child. In practice, well, it makes things a lot tougher, actually. The sitters varied. Most were well-meaning, but mostly they did what the name says---they sat. They sat in a chair and did nothing. They didn't play with Janey or help in any way. We were not supposed to leave Janey alone with them, so we still needed to be in the room with her. They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up. They became one more person in the room to protect from being hurt. We were unable to talk to each other with any candor. I felt I had to make conversation at least a little with the sitters to not be totally rude. They were an added source of stress for certain, although I know they didn't mean to be.
When Janey's behavior escalated in the hospital, we tried to handle it ourselves. If she got more upset, which probably happened about 10 times while there, we called the nurse. That was the procedure. The nurse could do little to help. She would call the psychiatrist on call, or what was called the behavioral team. The only real response they had was to give Janey more medication. There wasn't much else that could be done in the confines of a hospital room. A few days, Janey wound up overmedicated and groggy.
Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding? I have a few ideas. The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room. Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help. With sitters, either train them better or make them optional. Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time. Give the parents an hour of respite now and then. I was lucky to have my friend Maryellen help me several days with Janey. Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese! In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us. Seeing her friendly kind face quite a few times during our stay was wonderful. She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats. I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.
The United States is one of the richest countries on Earth. It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues. Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace. I hate to be that blunt, but that is the reality. One child having to "board" ever is one child too many.
Monday, November 17, 2014
A Whole New World Part Two
I am home for the night from the hospital---Tony is staying with Janey tonight, although I am of course on call if he needs me. I plan to go back in about 6 am tomorrow. Everyone has been telling me I should just sleep once I get home, and maybe that is good advice, but blogging here yesterday felt the first thing I've done in days that made sense. So I am going to continue my story. I don't think I'll catch up to the present this post, but we'll see.
After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened. One is that I found there was a woman in the room, someone called a "sitter". The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter. But I have found out since it's standard protocol for psychiatric patients in non-psych wards. They are women (so far all women) that sit in the room and keep an eye on how things are going. Some do more, some don't. They are there ALL THE TIME. If they have to go to the bathroom, they have to get someone else to come in. More on how that all feels later. At this point, I was too dazed to think much.
A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room. The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door. This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor. Again, we were supposed to keep the door open at all times.
Janey was very unhappy. She started to again lash out. This time, the psychiatrist covering the ER didn't want to give her more medication. He said instead we should just walk around with her to try to calm her. A good idea in theory, but in practice, it didn't work well. Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle. She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.
At this point, I decided I'd had enough. I called the nurse and said I felt being at the hospital was only making things much worse. I said I wanted to be discharged---that I needed to take Janey home. I kind of knew that wasn't going to happen, but I had to say my piece. I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling). The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay. She said she did have good news---we were going to be admitted and moved to a private room on a medical ward. We would be a term that is new to me, "boarders" I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available. I was learning new vocabulary fast that day.
The move came about an hour after that. The room was a huge step up from being in the ER. It was up on the top floor of the hospital, in what is actually a transplant ward. That is where they had room. It had a bathroom, a window ledge bed for parents and more room for Janey to move about. That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room. She had to stay in the room at all times---it wasn't considered safe for her to leave.
Janey freaked out again badly a little bit after getting to the room. She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence. A lot of nurses came in and had to restrain her. They gave her an extra dose of Risperadol again. After about 10 minutes, she calmed a bit. She eventually went to sleep around 9 that night. I told Tony he could go home, and I passed out cold asleep too.
Janey woke up at 3 am, freaking out once again. Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication. When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us. She was up from 3 on.
The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before. That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life. But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable. I say barely, because she was absolutely constantly restless. She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long. And endlessly, she would ask to take a walk. And I would have to say no---we couldn't take a walk. Which killed me. It felt, quite frankly, like being in prison. You have an agitated, frantic child who very much likes to stay active, and you can't leave the room? For days?
Janey went to sleep about 7 that night. I couldn't get to sleep right away. I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.
Janey woke at midnight, with another outburst. The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point. She said "You have to keep yourself safe. You have to step away when Janey is trying to hurt you. You can be a better mother to her if you don't sacrifice yourself" In my sleep-deprived state, my mind suddenly really understood that for the first time. I have to keep myself going. That is the only way I will be able to keep going for Janey. She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more. I have been reflecting on that thought a lot.
I want to write more, but I will listen to the last paragraph and get some sleep. As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight. We will have to remain at Children's Hospital until we get one. I hear often two weeks as a common time frame. I very much hope for something sooner. Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her. But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away. This new world is not going back to being the old world any time soon.
After I went back to the room, after Janey's major all hell breaking loose meltdown, a few things happened. One is that I found there was a woman in the room, someone called a "sitter". The whole world of this kind of hospital scene being new to me, I'd never heard of a sitter. But I have found out since it's standard protocol for psychiatric patients in non-psych wards. They are women (so far all women) that sit in the room and keep an eye on how things are going. Some do more, some don't. They are there ALL THE TIME. If they have to go to the bathroom, they have to get someone else to come in. More on how that all feels later. At this point, I was too dazed to think much.
A few minutes after going back to the room, I was told Janey was being moved once again, to a quieter area of the emergency room. The new room was a little bigger than the second room, but as in the 2nd room, a part of the room was closed off by a door like a garage door. This blocks off the area of the room with medical devices, the sink and everything really but beds and TV and floor. Again, we were supposed to keep the door open at all times.
Janey was very unhappy. She started to again lash out. This time, the psychiatrist covering the ER didn't want to give her more medication. He said instead we should just walk around with her to try to calm her. A good idea in theory, but in practice, it didn't work well. Janey kept trying to take off her clothes, and she didn't want to wear socks or shoes even when her clothes were on, which made leaving the room a battle. She several times stopped in the middle of walking the loop of the ER and tried to take off her socks or clothes again.
At this point, I decided I'd had enough. I called the nurse and said I felt being at the hospital was only making things much worse. I said I wanted to be discharged---that I needed to take Janey home. I kind of knew that wasn't going to happen, but I had to say my piece. I was crying hysterically and (in my mind) yelling (the nurse later said I wasn't yelling at all, but I am so non-confrontational it felt like yelling). The nurse said it wasn't safe to take Janey home, that although it was very hard, we needed to stay. She said she did have good news---we were going to be admitted and moved to a private room on a medical ward. We would be a term that is new to me, "boarders" I guess there are many boarders around---kids that need a psych ward but for whom no psych ward is available. I was learning new vocabulary fast that day.
The move came about an hour after that. The room was a huge step up from being in the ER. It was up on the top floor of the hospital, in what is actually a transplant ward. That is where they had room. It had a bathroom, a window ledge bed for parents and more room for Janey to move about. That last detail was more important than I realized at first, as I was told once we got there that Janey could not leave the room. She had to stay in the room at all times---it wasn't considered safe for her to leave.
Janey freaked out again badly a little bit after getting to the room. She did the routine that was now and is now starting to seem familiar---tried to take off her clothes, screamed, arched her back, lashed at me and tried to pull my hair and bite me, tried to do the same to the sitter in the room---the same awful sequence. A lot of nurses came in and had to restrain her. They gave her an extra dose of Risperadol again. After about 10 minutes, she calmed a bit. She eventually went to sleep around 9 that night. I told Tony he could go home, and I passed out cold asleep too.
Janey woke up at 3 am, freaking out once again. Very similar---a rapidly escalating hysteria that led to her having to be restrained and having her get more medication. When I say restrained, I don't mean with straps or anything---I mean her arms and legs held down by us. She was up from 3 on.
The rest of that day, Sunday (the days are blending together) felt a little more bearable than the days before. That is a very, very relative thing---before the two horrible days before, I would have felt like it was one of the worst days of my life. But since Janey didn't have a lashing out incident during the daytime, it felt barely bearable. I say barely, because she was absolutely constantly restless. She would want to watch TV, would watch for a minute or two, then change the channel, then want to get on the antique laptop, then on her iPad, then she would ask to take a shower and I would give her a pretend shower in the bathroom, just to change scenery (I gave her a real shower that night, but if she had any many as she would have liked, she'd have had 10 showers), then she would say she wanted to snuggle, then she'd want me to get up, then would go to where I was and want me to move again...repeat all day long. And endlessly, she would ask to take a walk. And I would have to say no---we couldn't take a walk. Which killed me. It felt, quite frankly, like being in prison. You have an agitated, frantic child who very much likes to stay active, and you can't leave the room? For days?
Janey went to sleep about 7 that night. I couldn't get to sleep right away. I wrote the blog entry before this one, I played some Scrabble I just lay there thinking and trying to organize all that had happened in my mind.
Janey woke at midnight, with another outburst. The nurse that came and helped me restrain her and calm her down said something that I guess I was ready to hear at that point. She said "You have to keep yourself safe. You have to step away when Janey is trying to hurt you. You can be a better mother to her if you don't sacrifice yourself" In my sleep-deprived state, my mind suddenly really understood that for the first time. I have to keep myself going. That is the only way I will be able to keep going for Janey. She was talking literally about when Janey bites or kicks me, but I expanded the thought to mean more. I have been reflecting on that thought a lot.
I want to write more, but I will listen to the last paragraph and get some sleep. As a preview of the next day's events, I'll say that we don't yet have any placement in a psych ward, and there is no sign of one in sight. We will have to remain at Children's Hospital until we get one. I hear often two weeks as a common time frame. I very much hope for something sooner. Of course, even then, Janey will not be home, and we will not really be home, although we won't be staying with her. But we will want to visit as much as possible, and the two possible hospitals are both at least an hour away. This new world is not going back to being the old world any time soon.
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