Continuation

Sorry for the delay. Busy week.

So, we are up to last Wednesday evening. We all had a good time. Apparently.

Our guests left, and I did a little cleaning up. I was so tired, I lay down for a short nap. Now I get a little fuzzy on the timeframe here.

Around seven, L. woke me up and said he was taking Toots back to Children's Hospital. She was anxious to go.

A short time later (7:30?) he woke me up again and said that Toots had just told him she went into his bathroom and took 22 Wellbutrin. (Remember what I said in the previous post, and don't be judgmental that we left meds in the medicine cabinet.)

Quiet panic ensues.

Toots is sitting in the front seat of L's car, not too responsive but awake, with clammy skin. I sit with her while L. calls Children's Hospital, and is told to take her immediately to Big Hospital ER. We determine that, since he has to work in the morning, I'll be the one to stay at the ER with her overnight. He and Toots take off for Big Hospital. I throw a few things in my tote bag,make sure The Ninja is all right (good thing he's old enough to stay by himself), and head out to Big Hospital.

When I get into the ER, Toots has had blood drawn and been given activated charcoal to absorb the medication. She has already thrown up and defecated all over the room, and the smell is something else. The staff are cleaning up her and the room. After they finish, L. leaves and I take over. Because it's a suicide attempt, Toots is also on one-to-one staffing. The aide and I sit with her, and she throws up three more times and uses the bedpan twice, with accidents. I'm glad it's not my job to clean things up here. They are also repeating EKGs periodically, as her first EKG showed QT prolongation (an abnormal heart rhythm).

Toots isn't talkative, but she does say a few things over the course of the evening. She tells me and L. that she took the pills because, during the water fight, her brother aimed the hose at her private parts and it made her recollect being raped at the age of four. She also tells me later that she didn't take Wellbutrin, she took some round tan pills, that were in a white bottle with a white cap with a white and blue label. When I convey this to L., he looks in his medicine cabinet and finds two supplements that meet that description. The next day, when he comes back to the hospital,he brings the supplement bottles, and she says they're not the right ones. Later, we find another bottle, his blood pressure medication, that meets her description but the pills are reddish-tan and long caplets rather than round. She says those aren't it either. So, we still don't know and probably will never know what she took.

But I'm getting ahead of myself. Around one a.m., they take her up to the Pediatric Intensive Care Unit. From there, it's a bit of a blur. The nurses get her into bed, re-hook up the hydrating IV and the monitors, caution me that she's to have nothing by mouth. We spend the rest of the night with the one-to-one aide, watching TV, having EKGs done periodically, having her vitals taken, etc. Toots doesn't vomit anymore, hallelujah, but she does have more bedpan accidents. Toots finally gets a few hours of sleep. I lie down on the pull-out chair, but don't fall asleep.

Around 6 a.m, I go down to the Starbucks in the lobby for a large coffee. At some point, I meet with the attending doctor and the residents, who all look about Toots' age, and tell them about her extensive psychiatric history, self-harming, current inpatient status at Children's Hospital, etc. etc. They are sympathetic. I am told that, because of the circumstances, we are going to have a psychiatric consult and a social work consult. Not that they're really necessary, since she is an inpatient receiving psychiatric and therapeutic care.

L. goes into work, but around noon he takes the rest of the day off, and comes back to the hospital. I go home exhausted and sleep for hours. L. stays, and meets with a child psychiatrist and social worker. We had kept in contact with the nursing supervisors at Children's Hospital, and the Big Hospital staff talk to them also. The doctors decide that they will keep her for observation until the evening, and arrange ambulance transportation for her back to Children's Hospital (needs to be an ambulance, since it's a hospital-to-hospital transfer). And that's what happens, around 7:30 p.m., just about 24 hours after the incident.

Although L. spoke with Toots' psychiatrist at Children's, we didn't hear from Toots for about 48 hours. Turns out she was sleeping most of that time.

Since then, she hasn't wanted to talk much with us about what happened. Can't say I blame her. I know she is discussing things with her therapist.

When I went to visit her on Sunday afternoon, she said, "Mommy, I want to come home." I ventured to remind her that on her last visit home, we'd had a significant problem. She said, "Oh, yeah, right."

I guess we are never going to be able to think that she's really doing "better."

After I typed that line, The Ninja came into the room and said that he was going over to his friend's house in the next block. I told him to put on sunscreen before he left. I got all kinds of BS about how he was only going to be outside for two minutes. When I told him to just do it, I got more flak about how I didn't tell him to put on sunscreen on July 4th. I said I wasn't perfect and not always perfectly consistent in my behavior. I got more flak.

I wasn't like this as an adolescent. I'm sure I wasn't. I'm so tired of it. And he's only fourteen.

"I don't need to be in the hospital"

I received a phone call from Toots' psychiatrist, Dr. S., at about 11:45 this morning. She filled in more of the story.

Seems Toots says she fell in the shower the other day. The staff didn't hear her fall, but they found her sitting on the floor of the shower stall complaining of back pain. (I let the doctor know that she has sat on the floors of showers for years, just letting the waterfall run over her for many minutes.) She was examined by the hospital pediatrician, who said she would be OK and offered her pain medicine. Toots didn't like that. As I have discussed before, her pattern for the last ten years is, with any pain real or not, to loudly and repeatedly insist on being taken to the nearest ER.

The most striking incidence of this behavior was five years ago, at my dad's wake. Toots claimed she had twisted her ankle running around outside, and was lying on a sofa moaning and groaning and insisting on an ER run. We have two doctors in the family - one a pediatric emergency specialist - and they both examined her and pronounced that she'd be fine with an ice pack and a little rest. Nothing doing for Toots. She kept complaining,louder and louder. Finally, Lew took her out for a ride in the car, which did not satisfy her but calmed her down a little.

Back to current events. Dr. S. observed that Toots seems to express her emotions through complaining about pain. True, doctor, we've been seeing that for a very long time. During the incident last evening, when she punched a staff member in the face, she was restrained manually. One of the people doing the hold had to twist her arm behind her back to get control. Today, she has been complaining about pain in her wrist. Again, she was examined by the pediatrician, who determined that it was not serious. She was offered ice and pain meds, which she refused. The pediatrician and the hospital's Medical Director agree that she does not need to go to the ER now, and on top of that, in her current mental state she is not safe to leave the hospital with staff.

Nevertheless, Toots kept insisting that the staff call me to take her to the ER. Dr. S. told her that she and Toots would call me at home together, during the lunch hour. I told Dr. S. that I absolutely would not take her, especially since they feel she is not safe.

This may be getting a mite confusing. Anyway, Toots and the doctor called me at about 12:30. I got an earful about "I don't need to be here, I need to go to the ER, I'm in a lot of pain, Mom, why don't you ever listen to me instead of to them?" She said that she bit the staffer because he had told her "Shut up." Hey, if that's the worst thing he said to her when she was raging, he has more strength of character than I do.

I tried to keep my voice as calm as possible and told her that it was NEVER okay to hit someone in the face. Since both doctors felt she didn't need to go, I was not taking her. (I didn't remind her, but I have vivid memories of Toots in a rage, attempting to grab the steering wheel, put the car into neutral, and run me off the road. Not gonna go there again.)

Her response was to hang up on me.

Oh, Toots. How can you think that you would be able to function in the outside world on your own?

Bad to worse

I just spoke with Toots' psychiatrist at the hospital. She is continuing to go downhill. I have to go out now, but more later.

Sigh

During my visit on Sunday, Toots kept insisting that she doesn't need to be in the hospital, she hates it, she knows what she has to do, etc. etc.

Last night at 9:30, we received a phone call from a nurse on her unit. Toots "had a bad day" yesterday, which means she balked at requests, spoke nastily to staff, picked arguments with other girls, refused to do her schoolwork, etc. etc. Her aggression escalated on the unit last evening. She scratched her arm, although she didn't have anything at hand to cut herself with. She also punched a staff member in the face. The nurse told us that the injured staffer has a cut on the lip, and that's all. Thank God. Toots had to be restrained (they use manual holds only) and given "stat" medication (quick-acting sedative). She was put back on one-to-one, with a staff member with her at all times. They had her sleep in the common area of the unit, rather than in her room, for monitoring purposes.

If she does get out into the "real world", how long would it take for her to hit someone and be arrested for assault? Worse, what if she hits a police officer (she's done it before, but no serious consequences because she's a minor and a psych patient)and gets Tasered or shot?

Keeps piling up

Last night, Toots punched a wall on her unit at Children's Hospital. She does this frequently, and has broken her right wrist several times. Not this time, thankfully. Just got a phone call. Today in school, she was having a verbal altercation with another girl. A male teacher stepped in and tried to break it up. Toots stabbed him in the side with a pencil.

Just broke the skin, fortunately.

I get so I don't even feel much at the announcement of new atrocities. It's just same old, same old with Toots, ten years' worth of it.

She thinks she is going to college when she finishes high school. We can't imagine how she would navigate a campus environment or make it through a class.

This and that

Lew and I visited Toots at the hospital last evening. We were sitting in the canteen, with two other families in the room. One family, the male teen patient and two women, was having a heated discussion. It seemed to involve the boy having or not having taken care of a pet when he was last at home. He was angry and accusatory, and whatever had happened was not his fault. (Cynical me: what else?) The women were upset. Later, before we left, I saw them in the hallway, without the boy, and offered my empathy. We agreed that we all keep doing the best we can. Sometimes it helps to know that others are in the same place.

I'm going to visit my mom in New Jersey tomorrow morning, for a day and a half. She is recently returned from her winter in Florida. A whole thirty hours of being someone other than a mom and a wife! Bliss! Well, maybe that's overstating it, since there are many poignant reminders of my dad and my brother all over the house. But at least I get to step outside my life for a little while.

Good visit

I had a good visit with Toots at Children’s Hospital yesterday afternoon. She showed off her latest artwork and her newly painted nails. We talked about how she’s doing there; things have been going pretty well for a couple of weeks, and she is working on her “Level 2” application. This refers to the hospital’s point system, in which her behaviors and staff recommendations contribute to reaching a higher level with additional privileges. We played Rack-O, a card game that’s an old family favorite. When Toots is feeling well and behaving appropriately, she can be very sweet and fun to be around.

It’s sometimes difficult to remember why she is hospitalized. Then, all I have to do is look at the scars up and down her left forearm. You see, she’s right-handed, so she cuts on her left arm, and when she’s mad she’ll punch a wall or door with her right. She’s broken her hand and wrist several times. I hope the good time lasts for a while, this round.

Reality

Was on the phone yesterday afternoon with Toots’ social worker at Children’s Hospital. Bless her, she is young, earnest and optimistic. She kept talking about how Toots is “making progress with understanding her emotions” in their counseling sessions. Honey, I appreciate what you’re saying, and what you’re trying to do with Toots. But she’s been working on “understanding her emotions” and “developing coping strategies” for ten years. Bottom line? She has “better” times and “worser” times. But overall forward motion? Not really.

Feeling down

Toots had an especially bad week at Big Hospital. Among other things, she injured another staff person. I will write a long post about what has been going on, when I have the energy. The Ninja has a karate tournament tomorrow, so at least that will be a diversion.

Moved

Toots was transferred yesterday to Big State Children's Hospital. She seemed OK. First thing, she saw kids and staff she knew. I had many meetings with social workers and doctors. One doctor mentioned the possibility, if she is not able to function after she turns 18, of long-term hospitalization at Big State Adult Hospital. Sigh. At least that would be closer to our house.

Quiet

We haven't spoken to Toots since my shortened visit on Friday. Very unusual for her not to call us. I spoke with the social worker at the hospital yesterday, and SW told me she wasn't interested in talking to us. Maybe we'll call her this evening.

Monday morning

Baggage's little daughter Stargirl is having surgery today. I know she would appreciate prayers and positive thoughts.

I made an appointment for Wednesday to clear Toots' stuff out of her room at the residence. She really is going back to Big State Children's Hospital. We haven't spoken to her since Friday, when she gave me a hard time during our visit.

Short visit

Toots didn't like the Aveeno skin lotion I brought her last weekend, and she requested baby lotion. She didn't like the smell of the Aveeno. Why did I accede to her request? Because she gets very dry skin in winter, and needs to be using lotion. Now that she's decided against the Aveeno, she'd rather eat nails than use it. So I brought her baby lotion. After that, my visit this afternoon didn't go well. You see, when Lew was on the phone with her the other night, and she was talking about having assaulted a staff person, he said (as we have done before), "Toots, I can't continue this conversation when you're talking about having beaten someone up. Love ya, honey, good night." And hung up. Note that he did not slam the phone down abruptly. Today, Toots started in on how she feels very insulted and disrespected by that action of his. I tried to explain to her that we cannot accept her assaulting staff, and that it is in no way OK. She said that it wasn't her fault (it never is), she got mad when they tried to get into her room, and "I just blacked out and didn't know what I was doing. When I realized what I was doing, I stopped." It was further excused by the fact that she hasn't done anything like that in years. I corrected her memory; it's been just over a year since she assaulted a police officer. She said, "Well, many months." In the discussion somewhere was, "I'm not stupid, I'm not a little kid, don't you think I know better, I apologized." Sorry, Toots, I don't buy that. Up till now, you've gotten a bye because you're a psychiatric patient. In the outside world, if you assault someone, you will be arrested and go to jail. Her reaction, of course? "Well, I won't do that!" Famous last words. How many times has she said "I know how to behave, I'll just do it", and then gone blithely on to do exactly the opposite. Anyway, to make a long story short, I left 25 minutes into an hour-long visiting period.

Bad to worse

Well, she cut herself again today, using the piece of foil off a juice cup. I would have thought that foil was too soft to cut anything, but when Toots is determined, she's determined.

We don't have full information yet, but the unit had to "call a code" on her this evening. She got mad about something (who knows what), barricaded herself in her room, and wouldn't come out. I assume the staff tried to get her to open up, because she got madder and assaulted one of them.  Apparently the person is not badly hurt.

Oh, Toots. Where in the world can you be safely? Is there anywhere?

Another step backwards

Toots is back on " close supervision", with a staff member near her at all times. She is upset about being referred to Big Children's Hospital and doesn't want to go there. So, she cut her arm three times (with what? Somehow she gets hold of things with points or edges), and stood outside the nursing station refusing to budge (I'm not sure about the timeline here).

I feel that 99 out of 100 people would not want to be on close supervision, and would act any way they needed to in order to end it. Sometimes it seems as if Toots welcomes it. She's always been all about the attention, and there's no attention more total than this. Just another aspect of Toots that is hard to understand.

Enough about that. Baggage of I'm looking for baggage that goes with mine is feeling especially sad today over a piece of medical news. Go show her some love.

Leaves me speechless

Visited Toots today at the hospital. It was a pretty quiet visit because she'd just gotten out of bed (at 3 pm). We were sitting in the unit dining room, and she mentioned that another girl had flipped all the tables and chairs in the room last night. Toots went on to describe how throwing furniture is "fun" because you get to express your feelings and "you get lots of attention from the staff". I said, "Toots, don't forget that, if you get a job, you wouldn't be able to do that if you got upset". She laid into me about how I "always hassle her". "I KNOW I wouldn't be able to throw furniture! Why do you always have to say the same things!" Etc., etc.

Again, nothing I haven't heard a thousand times before.

She's supposed to be in eleventh grade. We should be looking into colleges and shopping for a prom dress. Instead, she's settled into an institutionalized life of sleeping, eating, and watching TV. I fear she will never go back to school at this point. If she doesn't want to, the law says we can't force her.

I know that she is who she is, but it still makes me very sad.

Cause and effect

Just got off the phone with the nursing supervisor from Toots' unit. Because of the furniture throwing, her doctor has decided that she can't ride unescorted with me to her gastro appointment tomorrow. She and a staff person will take a Medicaid cab and meet me there. So, once again, she has sabotaged something she wanted (driving with me, so she can ask to go shopping or eat) by her own behavior.

She has done this so many times over the years, it doesn't even surprise us anymore.

What passes for normal

Just got off the phone with Toots. She said that she went to "school" at the hospital today, for the first time since she's been there this round. She didn't do her work in the classroom for some reason; she went back to her room on the unit and did it there. The teacher did not award her the points she was supposed to have earned.

"So", she said matter-of-factly, "I threw furniture."

It's always something

I made the appointment with the pediatric gastroenterologist on Saturday morning, and informed the hospital immediately. The plan was for me to drive her back and forth to the appointment. I also re-confirmed this with the unit's nursing supervisor, when we were there visiting Toots yesterday afternoon. So there shouldn't have been any problem, yes?

No.

I arrived at the hospital this morning, leaving a good window of extra time to get to the doctor's office. Informed the nurse at the nursing station that I was there to pick up Toots, and all heck broke loose among the staff.

See, due to her self-harm and suicidal statements Toots has been on "close supervision", which means a staff person is only a few feet away from her, 24-7. Since she has been OK for a few days, this morning she was taken off "CS" and moved to the next lower level of supervision. Her psychiatrist had announced, during morning rounds, that because Toots had just come off "CS", she couldn't ride with me alone in my car. The morning staff had not been informed about the appointment. Many phone calls were made among various offices, trying to find a staff member who could drive her. (I would have met their vehicle there.) I didn't see her, but back inside the unit Toots was apparently having conniptions at the idea of a staff person driving her. (I strongly suspect that she was intending to ask/tell me to take her out to lunch. Because of the timing of the appt., I would have done so anyway. But I digress.)

In the midst of all this, Dr. decided that Toots could only travel in an ambulette. I was informed that an ambulette would be pulling up momentarily. Then, it wasn't going to happen. I was asked to call the doctor's office and try to reschedule the appointment for later in the day. Knowing how this office runs the schedule, I didn't think it was likely, and I was correct. I was fortunate to be able to reschedule for Thursday. If she has an OK couple of days, they will let her ride there with me unescorted.

So is anybody thinking, "Is that really a good idea?" It probably wouldn't have been a problem today, and there probably won't be trouble on Thursday. True, in past years, Toots and I have had some scary car episodes. Like when she tried to seize the steering wheel and run me off the road....and when she fought me and gave me a bite scar that's still visible on my arm....

But, going to a medical appointment she has been clamoring for, and with the prospect of food afterward, most likely she would have been fine.

Still, you never know. And, this is not the kind of hospital policy we tend to question (although there certainly have been others over the years). And, I'm used to things not going as planned around Toots. Very used.

Another detail

Regarding the overdose threats. Toots told her intention to a staff member on the unit, on Wednesday afternoon. That evening, when she was given her bedtime meds, the administering nurse saw that she did not swallow her Seroquel, but hid it in her pants. The nurse asked her to take it out, and Toots went ballistic, screaming "Why doesn't anybody trust me? I took it!" and threatening to punch the nurse in the face if she touched her. Toots went into her room, and another girl followed her and said, "I know you have it." Toots gave the Seroquel to the girl, who took it to the nurse.

She has a history of "cheeking" her meds, and she's very crafty. She tells us that she "doesn't want to be in the world anymore".