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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.


Sabrina Steyling said...

Suzanne, I am glad to see you writing - Anne Rice said it best, that "Writing is salvation." I have learned that in my own life, and I believe that it is the same for you in what you're going through now with Janey. Yes, the nurse is right, you definitely need to take care of yourself and get sleep, but don't stop writing. If you feel the need to, DO IT. It will be one of the best decisions you'll make.

I am still thinking of and praying for all of you! I think that things will fall into place, and that soon enough Janey WILL get the help she needs - and you, Tony, and the boys will too. Love and hugs, Sabrina

grammacello said...

Suzanne, I admire you greatly for being able to blog during this. As the previous commenter said, it is a sanity saver and I confess that at our worst moments with Shawn, I could not. If I had, it would have helped keep me sane. Also, and I do not tell many people this, we ALL have a breaking point. I did not really believe it, until it happened to me, I held myself together for a long eight years before I fell apart, after his death. It is also insidious, a nervous breakdown, which is what they called it. I neither saw it coming or could have prevented it. You need to do everything you can to prevent this and the reaching out, by blog is a wonderful tool for this. Remember too, also, the boys need a functioning mother, even at their ages.
All love and support to you. And by the way, I play online scrabble and am pretty good. If you play real people and not just the computer I would love to play with you! I was doing it through Facebook, I think but I am sure it could be figured out. Please take care, and here is a hug.

Freeyoke said...

So Janey's behavior took a nosedive in school and she ended up in a hospital? Is it really that much worse than one of her bad days and the medical staff are shocked to see her in an agitated state because they don't know her? I'm not there so I don't know jack or medical stuff but doesn't seem there's a simple magic pill or treatment even in a hospital. For modern people I think hospitals are the closest we get to expecting miracles or people who can make things right again. So Janey may be in the best place for now even though it doesn't seem that way now. The 24/7 observation is a standard prudent measure for all involved.

Unknown said...

Again sorry to hear this. Ages family had to go thru this exact situation probably around the same age as Janey, both at age 10 and again at 15. Same scenario too school called ER and she was sent away to live at a ward for awhile. And the place was over an hour away and they had to visit her through a glass window at times. Same problem too. Because of self injurious and aggressive behaviors. It sucks. Hopefully though this leads to only a better outcome. For her ripping off her clothes repetitively. Would she wear a wetsuit? It's tight so it might give her a calm feeling and she can't just undress. Her family would bring music and just fill the room with a ton of different music she liked. Would that be possible to maybe bring the iPod and a speaker? Either way good luck and keep us updated. Thinking of you guys.

asteng1234 said...


We don't know each other, and I don't have a child with autism, but I follow your blog and just wanted to say you've been in my thoughts so much this last week or so. Your story touches me deeply and I send positive thoughts and prayers your way often. I'm so sorry for your latest set of struggles, and I so truly wish things can be better for you and your family. You are so strong. Please remember to take moments to care for yourself, Janey needs you to do that even if you sometimes feel you should be there for her 24/7.

Kindest thoughts and regards,

cee said...

I am so sorry that things have gotten so bad, but I'm glad that the hospital is an option. You are such a good mother. Janey will be okay - I've had friends and family in inpatient psych, including in ped/adolescent psych, and no one enjoys it while it's happening, but it's really good for finding the medication combination that people need to go back out into the world and stay safe. You guys deserve all the help and support you can get - you as parents, and Janey as Janey.