After we got the news that Janey would be going to Bradley Hospital, we started packing up the room and getting ready for the call that is was time to go. We were told it would be a few hours, probably into the afternoon before we went, which was fine. Janey wasn't having a good day. Maybe just the change in the mood and the moving around of the stuff in the room upset her. She was screaming a lot, very agitated---not happy. Our "sitter" for the day was the same one we had had on Sunday. On Sunday, she had been one of our least favorite sitters. This day, however, after we took a while to talk to her, we found her to be a wonderful woman---warm and understanding and interesting. It taught me something I need to be taught over and over in life---that first impressions aren't always right. She told us she was praying hard for Janey. I am not much of a prayer, but I am a huge appreciator of people praying for me, and I was touched by her saying that.
As the day wore on, it was apparent that Janey's discharge was taking longer than anyone had said it would. Finally we were told there was some kind of hold-up with the insurance, but that it would be taken care of and we shouldn't worry. Well, I worried. A nurse once again checked with the referring department, and they said it wasn't the insurance, it was that they were waiting for a call from Bradley, and she suggested I call Bradley myself. I did, and they said it WAS the insurance---that they had not yet gotten the authorization. I told that to the Children's Hospital people, and they said not to worry again. I decided to call our insurance myself. That was not a fun call. The department that deals with our particular brand within the brand closes at 4:30pm. I called about 4:35, and although the woman I reached was very kind, she said there was no way at all she could access those records. I told her we could lose a placement we had been desperately waiting for, and she was very upset, but I don't think sincerely could do anything. I started calling every number on my card. I finally reached someone who might have been able to help. At that moment, a nurse found me and showed me a wonderful set of numbers--the authorization had come through.
The next wait was for the ambulance to take Janey to Rhode Island---about an hour's drive. It's a little unusual for people to be moved medically from Boston to Rhode Island. Usually it would be the other way around. So it took a while to get the ambulance. In the meantime, Janey was very upset. At one point, she suddenly lunged at and bit the sitter. The sitter was great---she said it was nothing, that Janey was sick and we should not worry about it. But word got out and the nurse in charge told the sitter she had to go report the incident to the hospital police and then go to the workman's comp office. The sitter tried to say the bite had not broken the skin and there was no need, but the nurse insisted, so the sitter left and I never really got to thank her. She was the last sitter we had---I guess since we were leaving, it was no longer considered necessary.
Finally, about 8 o'clock, we got an ambulance. The EMTs were wonderful. EMTs must be a special breed of people---they always seem great. Janey was thrilled to be leaving the room. She got onto the gurney very willingly, and was happy and alert almost the whole long trip to Rhode Island. I saat behind her, so she couldn't see me, and I did have to reassure her several times that was there. But overall, the ride was great. We arrived at the hospital about 9.
My first impression of the hospital, in the dark, was that it was much bigger than I pictured---all kinds of buildings. We were ushered into the admitting lobby. A security guard checked us for metal and took my bag to inspect. We didn't mind that at all---it kind of felt reassuring. The lobby was lovely---a gorgeous room, and we were met right away with lots of people. There were a lot of preliminary questions to be asked, and paperwork to be done. Janey was mostly happy, although she did bite herself a few times and once lunged at Tony, so it was seen why she was there.
One funny moment---I guess to certify that Janey was being admitted voluntarily, since she is 10, if possible they wanted her to sign a form saying she was there willingly. Janey can make a "J", and occasionally write the rest of her name if she is in the mood. We got the form and explained it to her---I am quite sure she didn't totally get it, but she took the pen and made a big "J" all over the paper. And that counted. Janey's first signature of a legal document! Thanks to all the teachers who taught her to write the J!
After a bit, a nurse came to take Janey to her ward. We stayed behind for a bit, signing a lot more papers. We learned a bit about her ward. It holds in total up to 18 kids, in two wings. Right then, there were 16 kids including Janey. And were were told that at the current time (even then at night) there were SIXTEEN milieu therapists. Milieu therapists was a another new term for us. Here's a definition---Milieu Therapist That is an amazing amount of hands on help! We were starting to realize we might be in a very good place.
We went to say goodnight to Janey in the ward after that. She had been given a room, her own room. It has a nice bed and a comfy chair, and a bathroom next to it. We were told someone would stay outside her door until she fell asleep. She was happy and excited. When we said goodnight, she waved dismissively and said "goodbye!" She has never been one to have a hard time separating from us, which in this case was good---we were able to leave without breaking down much.
The ride home continued the theme of the week---being stuck. We had a nice drive for the first 45 minutes or so, although we were both beyond tired. Then---nothing but brakelights. Something had stopped traffic on Route 95. We sat totally stopped for over an hour. We finally turned off the car and just waited. We called my sister in Colorado to see if she could look on line what was happening, as we don't have any smart phones, just dumb phones. She figured out the problem was something to do with downed wires. Finally, traffic started again and we finally got home about 1 am.
We slept very soundly last night! Now we are about to call to see what time the hospital wants to meet with us today. We are going to meet Janey's psychiatrist and start working on a plan as to what happens next. I am feeling hopeful, but still---overwhelmed, nervous, scared, stunned. I think she is in the right place, and I think we are on our way, but it's going to take a while for me to be able to really feel less than on full alert. It's been an experience so far like none in my life, like no experience I ever expected to have in my life. And it's a journey that is going to continue.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label psych ward. Show all posts
Showing posts with label psych ward. Show all posts
Friday, November 21, 2014
Tuesday, November 18, 2014
The hospital story continues
I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.
Monday morning, after a fairly sleepless night, Tony went into work to try to get in a few hours. Janey was restless, but not lashing out. We had a lot of calls and visits. The medical doctor assigned to her came in and talked tome. She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me. After that, both her regular psychiatrist and her pediatrician called. Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it. I was kind of surprised they both saw that about me.
My dear friends Maryellen and Fab both visited that day. Maryellen stayed almost all day, which was a huge help. Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey! Later in the day, Janey's classroom teacher also came to visit. She brought Janey a big bag of books and other things from the classroom that Janey especially likes. We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug. It is so good to see how much she loves her teachers and they love her.
When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey. We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find. She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then. One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now. We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)
Then----I went home. I got a ride home with Maryellen, and got home about 4. It felt hugely weird to be home. It felt like I had been gone years, not just days. I was bone tired, but not quite ready to sleep. I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza. I did some computer time. By 8, I was so tired I wasn't even able to really function. Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully. But I felt wired, like I couldn't sleep. I wound up taking some melatonin, some we had gotten for Janey which never worked for her. It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.
Tony had a fairly good night with Janey. She slept from 7 until 3 am, which is not even that early a wake time for her. He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.
I got back to the room about 6:45. The plan had been for Janey to have an MRI at 7, but we had heard nothing. When we finally did, it was that the MRI had been delayed until noon. That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am. She spent the morning begging for food and drink. It was a long morning, but she remained pretty calm. The contrast to the events of the weekend was incredible. As it so often does with Janey, her mood had simply changed.
Janey finally had the MRI about 2. It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave. They gave her oral sedation, which took extra long to take effect, and then an IV. We went back to the room while she was under. It felt very odd being in the room without Janey. Finally, they brought her back around 6, but she still hasn't woken, as of 8:45. They aren't concerned, as she is on a monitor and she had so much sedation. I am only concerned how she will react when she wakes up.
So---I am caught up to the present! Although the present is still filled with much uncertainly. When talking to the social worker tonight, we found there is still no progress on the placement. There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital. As much as I want her home, I don't like that idea. We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help. I don't want this whole ordeal to result in nothing. I am glad Janey is calmer, but that is what Janey does---she cycles. Although we all always hope her cycles stay good forever, all who know her know that is most unlikely. And I don't ever, ever, ever want to come back here as we did on Friday. So---we will see what the next few days hold.
Monday morning, after a fairly sleepless night, Tony went into work to try to get in a few hours. Janey was restless, but not lashing out. We had a lot of calls and visits. The medical doctor assigned to her came in and talked tome. She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me. After that, both her regular psychiatrist and her pediatrician called. Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it. I was kind of surprised they both saw that about me.
My dear friends Maryellen and Fab both visited that day. Maryellen stayed almost all day, which was a huge help. Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey! Later in the day, Janey's classroom teacher also came to visit. She brought Janey a big bag of books and other things from the classroom that Janey especially likes. We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug. It is so good to see how much she loves her teachers and they love her.
When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey. We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find. She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then. One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now. We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)
Then----I went home. I got a ride home with Maryellen, and got home about 4. It felt hugely weird to be home. It felt like I had been gone years, not just days. I was bone tired, but not quite ready to sleep. I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza. I did some computer time. By 8, I was so tired I wasn't even able to really function. Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully. But I felt wired, like I couldn't sleep. I wound up taking some melatonin, some we had gotten for Janey which never worked for her. It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.
Tony had a fairly good night with Janey. She slept from 7 until 3 am, which is not even that early a wake time for her. He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.
I got back to the room about 6:45. The plan had been for Janey to have an MRI at 7, but we had heard nothing. When we finally did, it was that the MRI had been delayed until noon. That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am. She spent the morning begging for food and drink. It was a long morning, but she remained pretty calm. The contrast to the events of the weekend was incredible. As it so often does with Janey, her mood had simply changed.
Janey finally had the MRI about 2. It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave. They gave her oral sedation, which took extra long to take effect, and then an IV. We went back to the room while she was under. It felt very odd being in the room without Janey. Finally, they brought her back around 6, but she still hasn't woken, as of 8:45. They aren't concerned, as she is on a monitor and she had so much sedation. I am only concerned how she will react when she wakes up.
So---I am caught up to the present! Although the present is still filled with much uncertainly. When talking to the social worker tonight, we found there is still no progress on the placement. There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital. As much as I want her home, I don't like that idea. We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help. I don't want this whole ordeal to result in nothing. I am glad Janey is calmer, but that is what Janey does---she cycles. Although we all always hope her cycles stay good forever, all who know her know that is most unlikely. And I don't ever, ever, ever want to come back here as we did on Friday. So---we will see what the next few days hold.
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.
Sunday, November 16, 2014
A whole new world Part 1
As I write this from an old laptop at Children's Hospital in Boston, on Sunday night, it is hard to believe all that has happened in the last two days. It will take me a long time to write all I want to, but this will be a start.
Last week was a tough one. Janey was showing a lot of aggressive and self-injurious behaviors, and we were not sure what was up. But I think we figured that she'd had bad spells before, and they got better. We were not planning to do much with this current bad spell but wait it out. Janey went to school on Friday, and I somehow felt very relaxed, like things were turning around. That is how good my ESP is. I got a call from the school around 1. Janey had been screaming, lashing out, hitting herself, biting herself and trying to bite others for several hours. I said I would come get her, but the nurse said she didn't feel it would be safe for me to take her home. They said they were calling an ambulance to take her to the emergency room.
I was stunned, overwhelmed, hysterical. I simply hadn't thought of that potentially happening. I am not sure why. I drove to the school crying. I'm not sure how I made it without an accident. When I got there, about 5 teachers and therapists and nurses were gathered to talk to me. They were all wonderful, but felt very strongly that Janey needed help, immediately. And so I agreed to have her go in the ambulance. Her great classroom teacher came with me,and another teacher followed to bring Janey's teacher back to the school afterward. They truly went above and beyond, but I was still in a state of shock.
Janey enjoyed the ambulance ride immensely. So much so that I started to think we would get to the hospital and they would say "why in the world are you here?" If only...We got a room in thr ER right away, and were seen by triage, mostly just to take vital signs. Janey was agitated in the room, but not severely so at first. A few hours after we arrived, we were seen by a psychiatrist, who observed Janey and heard about what had happened during the week. She took the numbers of the teacher, the administrator and a social worker at the school,and I heard later she did call them all,which was good. She told us that based on what she had seen and heard, she felt Janey should be admitted to a psych ward. I had assumed if this was the case, she would be at the ward at Children's, where we were, but she explained that only a few hospitals were equipped to deal with low functioning, aggressive autistic children. She knew of two---both probably an hour from Boston. She said they would check for space at them, but it was highly unlikely they'd have a space right now, and that we would stay overnight in the ER.
After a bit, we were moved to another room. The new room was MUCH smaller than the other ER room, and was right by a very busy nursing station. We were told we needed to keep the door to the room open, so Janey could be observed at all times. There was barely room in in the room for a bed and a chair for me. Janey finally fell asleep from exhaustion, about six pm, and I fell asleep shortly after. I told Tony he could go home for the night.
Around 11, Janey woke up. She immediately started trying to take off her clothes, which were wet. I had no other clothes, and the ER brought me some pants and a top---the pants were about a men's size XL and the top a child's size XS. Neither of course fit on Janey. I also had no more pullups. They brought me an adult diaper, about a size also men's XL, with the tapes gone. Needless to say, this didn't work out. Janey was getting more and more upset and taking off her clothes and screaming. AT that point, I gave in and called Tony and asked him to come back, with clothes and pullups. He did, but Janey didn't go back to sleep. She remained awake, agitated and wild. I was beyond tired and beyond overwhelmed.
Janey seemed a little calmer around 8, and I told Tony he could go home and try to get a little more sleep, Well, that might have been a mistake. Shortly after he left, all hell broke loose. I don't think I can even describe how badly hell broke loose. Janey started lashing out, trying to bite me, pulling my hair and screaming. When a nurse came in to help, she did her best to hit and bite the nurse. She was ripping off her clothes repeatedly,and trying to run out in the hall. She took a carton of chocolate milk and flung it at the wall. She landed a bite on my hand. A crowd had gathered, of nurses and security people and even policemen. I felt like I'd gone into slow motion, like this was part of a movie or dream. Someone told me to leave the room so I would not get hurt more.
I was taken to a small quiet room and a lovely nurse gave me some coffee and toast. She said they would work on Janey and I should rest. I had two minds---one said I should stay with my child who was so upset, and the other knew I couldn't, that I was at the end of some kind of limit that could not be pushed any further I h/adn't slept, I was in the middle of the toughest day of my life, I was in a state of shock. So I sat and drank the coffee and ate the toast and called Tony, who was understandably also stunned at the turn things had taken.
After a while, a nurse came in and asked how Janey usually responded to Ativan, an anti-anxiety drug. I said she had never had it before that day. She said they had been considering giving Janey a dose of Haldol, which I knew was an anti-psychotic, by shot, because she had still not calmed down, but they decided to give her some Risperadol instead, as Janey already takes that, and they didn't want to mix the two. They gave her an extra dose of the Riperadol. They told me to rest and they would call me when Janey needed me/
Needless to say, I couldn't rest/ I tried, but I felt I had to see how Janey was doing. After about half an hour, I went back to her room. She was looking close to sleep, biting on a bite toy. I hugged her and held her. She stayed awake, although she was quite out of it. I sat there, empty of all emotion, waiting to see what happened next.
I'll try to write part 2 soon. I'm not trying to build suspense---my eyes are closing. I need to sleep while Janey sleeps/ So I will close by saying the support all of you have given me since my sister posted on my Facebook page has helped to keep me going in this last few very dark days, and I am extremely, overwhelming grateful. I haven't been great about answering notes or calling people the last few days, and I will try to be better as the situation allows, but please do know I treasure all of you.
Last week was a tough one. Janey was showing a lot of aggressive and self-injurious behaviors, and we were not sure what was up. But I think we figured that she'd had bad spells before, and they got better. We were not planning to do much with this current bad spell but wait it out. Janey went to school on Friday, and I somehow felt very relaxed, like things were turning around. That is how good my ESP is. I got a call from the school around 1. Janey had been screaming, lashing out, hitting herself, biting herself and trying to bite others for several hours. I said I would come get her, but the nurse said she didn't feel it would be safe for me to take her home. They said they were calling an ambulance to take her to the emergency room.
I was stunned, overwhelmed, hysterical. I simply hadn't thought of that potentially happening. I am not sure why. I drove to the school crying. I'm not sure how I made it without an accident. When I got there, about 5 teachers and therapists and nurses were gathered to talk to me. They were all wonderful, but felt very strongly that Janey needed help, immediately. And so I agreed to have her go in the ambulance. Her great classroom teacher came with me,and another teacher followed to bring Janey's teacher back to the school afterward. They truly went above and beyond, but I was still in a state of shock.
Janey enjoyed the ambulance ride immensely. So much so that I started to think we would get to the hospital and they would say "why in the world are you here?" If only...We got a room in thr ER right away, and were seen by triage, mostly just to take vital signs. Janey was agitated in the room, but not severely so at first. A few hours after we arrived, we were seen by a psychiatrist, who observed Janey and heard about what had happened during the week. She took the numbers of the teacher, the administrator and a social worker at the school,and I heard later she did call them all,which was good. She told us that based on what she had seen and heard, she felt Janey should be admitted to a psych ward. I had assumed if this was the case, she would be at the ward at Children's, where we were, but she explained that only a few hospitals were equipped to deal with low functioning, aggressive autistic children. She knew of two---both probably an hour from Boston. She said they would check for space at them, but it was highly unlikely they'd have a space right now, and that we would stay overnight in the ER.
After a bit, we were moved to another room. The new room was MUCH smaller than the other ER room, and was right by a very busy nursing station. We were told we needed to keep the door to the room open, so Janey could be observed at all times. There was barely room in in the room for a bed and a chair for me. Janey finally fell asleep from exhaustion, about six pm, and I fell asleep shortly after. I told Tony he could go home for the night.
Around 11, Janey woke up. She immediately started trying to take off her clothes, which were wet. I had no other clothes, and the ER brought me some pants and a top---the pants were about a men's size XL and the top a child's size XS. Neither of course fit on Janey. I also had no more pullups. They brought me an adult diaper, about a size also men's XL, with the tapes gone. Needless to say, this didn't work out. Janey was getting more and more upset and taking off her clothes and screaming. AT that point, I gave in and called Tony and asked him to come back, with clothes and pullups. He did, but Janey didn't go back to sleep. She remained awake, agitated and wild. I was beyond tired and beyond overwhelmed.
Janey seemed a little calmer around 8, and I told Tony he could go home and try to get a little more sleep, Well, that might have been a mistake. Shortly after he left, all hell broke loose. I don't think I can even describe how badly hell broke loose. Janey started lashing out, trying to bite me, pulling my hair and screaming. When a nurse came in to help, she did her best to hit and bite the nurse. She was ripping off her clothes repeatedly,and trying to run out in the hall. She took a carton of chocolate milk and flung it at the wall. She landed a bite on my hand. A crowd had gathered, of nurses and security people and even policemen. I felt like I'd gone into slow motion, like this was part of a movie or dream. Someone told me to leave the room so I would not get hurt more.
I was taken to a small quiet room and a lovely nurse gave me some coffee and toast. She said they would work on Janey and I should rest. I had two minds---one said I should stay with my child who was so upset, and the other knew I couldn't, that I was at the end of some kind of limit that could not be pushed any further I h/adn't slept, I was in the middle of the toughest day of my life, I was in a state of shock. So I sat and drank the coffee and ate the toast and called Tony, who was understandably also stunned at the turn things had taken.
After a while, a nurse came in and asked how Janey usually responded to Ativan, an anti-anxiety drug. I said she had never had it before that day. She said they had been considering giving Janey a dose of Haldol, which I knew was an anti-psychotic, by shot, because she had still not calmed down, but they decided to give her some Risperadol instead, as Janey already takes that, and they didn't want to mix the two. They gave her an extra dose of the Riperadol. They told me to rest and they would call me when Janey needed me/
Needless to say, I couldn't rest/ I tried, but I felt I had to see how Janey was doing. After about half an hour, I went back to her room. She was looking close to sleep, biting on a bite toy. I hugged her and held her. She stayed awake, although she was quite out of it. I sat there, empty of all emotion, waiting to see what happened next.
I'll try to write part 2 soon. I'm not trying to build suspense---my eyes are closing. I need to sleep while Janey sleeps/ So I will close by saying the support all of you have given me since my sister posted on my Facebook page has helped to keep me going in this last few very dark days, and I am extremely, overwhelming grateful. I haven't been great about answering notes or calling people the last few days, and I will try to be better as the situation allows, but please do know I treasure all of you.
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