Timeline through 7/10 – Just the Facts

This crisis undoubtedly has earlier roots, but we first noticed changes in late May. The bullets below give the basic timeline, and we’ll follow that with more observations and reactions. After this initial lengthy post of details, we’ll just do shorter ones for brief time periods when there are any changes.

·         Late May: She had severe insomnia during her last week of school, sleeping a total of about 6 hours over a period of 6-8 days. She lost her appetite, and eating became a closely monitored chore with Ensure supplements. She started to get shaky and dizzy, and she didn’t seem to think clearly. She talked a lot. Her stories got more complex, weird, and fragmented.

·         Early June: We took her to the doctor, but we still chalked up the behavioral changes mostly to sleep deprivation. We thought the insomnia might be related to stress - graduating from her Success transition program, her job ending (at least temporarily), her recent jaw operation or  botched dental work (they knocked out a tooth), or watching us pack up to move across town. The doctor was concerned about the fragmented, racing thoughts. He prescribed Clonipin to calm her and help her sleep, and he referred us to a psychiatrist.

o   The earliest opening with the psychiatrist was a month away, 7/6.

·         Mid June: Blood tests came back showing very high thyroid hormone, which can cause insomnia, racing thoughts, and loss of appetite. Ah, the beauty and comfort of a diagnostic label that explains and simplifies! We relaxed a bit, both because of that diagnosis and because her symptoms improved. She was sleeping better, eating better, and thinking/talking better.

o   However, her thyroid levels were back to normal in the next test, and the doctor said it may have been a temporary “hot spot” spike. We got a referral to an endocrinologist, but he didn’t take our insurance. We found one who did and made the earliest possible appointment – in August!

·         Late June: Insomnia returned in full force, and the fragmented thoughts became alarming. Chelsey alternated between saying she was a goddess and saying she didn’t produce anything. Chelsey made passing references to economic value as the basis for staying alive and asked us why we were wasting resources on her. When we could follow her stories, they seemed to emphasize the movie TRON Legacy (I know – why couldn’t she have at least picked a decent movie as her backdrop for this crisis?!). She became obsessed with a character named Sam Flynn and a sci-fi brilliant child named Ender (from the book Ender’s Game).

·         Thurs, 6/28: We went off the deep end when Chelsey ran away from home and got four blocks before entering two different houses (complete strangers). The police brought her home, and Beth ran to her weeping. Wading through hours of convoluted stories and initial resistance revealed the following:

o   Chelsey had tried three ways to kill herself that night. They were weak gestures, but death was her intent. She said it was because she felt worthless. She felt bad partly because she didn’t contribute anything of economic value, but mostly because of shame over saying in public that she was thinking a lot about sex.

o   She dunked her phone and her Nintendo DS in the sink because she didn’t think she deserved them.

o   When she couldn’t kill herself, she ran away.

o   She was overly focused on sex, as is common with mania.

o   Chelsey got calm and lucid by the end of our discussion. We felt safe waiting until the morning to take her to the hospital and decide next steps. We hid the knives and blocked exits just in case. Chelsey went to bed just before midnight, Beth stayed up most of the night, and I was up with bad dreams very early on Friday.

·         Fri, 6/29. Chelsey came into our bedroom about 5:30am with wet hair and face, saying she had tried to kill herself again by drowning in the bathroom sink. We made our first trip to the ER at the local hospital. After 9 hours in a barren, cell-like room, they concluded that they didn’t have the specialized care she needed, and more distant hospitals with capability did not have open beds. They also said she had textbook symptoms of mania (plus perhaps other issues). Chelsey could have stayed there in the ER, but we decided to monitor her 24/7 at home over the weekend while looking for openings in specialized facilities.

·         Sat, 6/30 – Sun, 7/1. This was a miserable weekend of sleepless nights (despite the Clonipin) and a fractured, unimproved psyche. We took turns sleeping with our mattress blocking her door. Maybe we’ll write more about this later.

·         Mon, 7/2. There were still no beds open, but Chelsey became completely unmanageable and made another suicidal gesture. She spent two hours in the shower with her clothes on, refusing to get out or to finish the shower with soap on skin. She insisted she was in another super-intelligent class, and that we just couldn’t understand her or the true reality she saw. We took her to the local ER in her wet clothes, physically lifting her into the car against her will.

o   She spent the night there under sedation and without us. That was her first night ever in a hospital without family.

·         Tues, 7/3 - Fri, 7/6. A neuropsych hospital in Baltimore admitted Chelsey to a lockdown unit for nonverbal patients (because nobody could understand her). It was far from ideal, but we were ecstatic that she got admitted someplace that could keep her safe and had the specialized resources she needed.

o   Visiting hours are limited, but we have been there every hour they let us. It seems like a wild place with its own bizarre rules and social dynamics among a host of severely impaired patients. We believe our visits are the sanest parts of her day and the only chance that she has to truly communicate in any depth.

o   We’re deeply concerned that the environment will worsen her condition or weaken her grasp on reality if she’s there for very long, yet we need them to monitor Chelsey, get her on stabilizing meds, and diagnose any contributing neurological/physical issues. It’s a huge trade-off, and we’re still conflicted and revisiting our decision daily as of this writing (7/7).

o   Her behaviors during this period were unstable, and she managed to surprise even some nurses. She repeatedly barged into other patients’ rooms to gather evidence that men and women were different; she was preparing a case to stop the manipulation of the courts based on clothing. She shouted and retched a lot. She climbed into the shower with her clothes on, stopped the drain, and flooded the bathroom. She threw her clothes and mattress around her room. She tore open her mattress, ripped some of the stuff inside, and climbed into the cover to sleep.

o   On Friday night (7/6), we got a voice mail from her doctor that they’re still observing her before big decisions, but they’re exploring moving her to another unit that can better meet her needs. We don’t have any details, but we hope that means one where she have better options for communicating, potential for talk therapy, and more functional fellow patients. We missed the call because we were there visiting Chelsey down the hall from his office. The staff had told us he was gone. Blerg.

·         Saturday, 7/7. We got to talk with the doctor in person – hooray! We liked him, and he could even understand part of what Chelsey said. He understands that she has a great deal to say and a big vocabulary. She is more functional than the other patients they consider nonverbal, and he gets that. News and outcomes:

o   The med she’s been on since age 12 for OCD is actually a generic for Celexa, an anti-depressant. A mood elevator exacerbates the problems of elevated moods in a manic episode, and he’s already weaning her off of it. (I knew about this potential problem in the abstract, but I didn’t realize the drug shown on her Rx was a generic anti-depressant. Also, she’d never been manic before, so there was no reason to question it.)

§  We thought she was already doing better since he cut the Celexa dosage. She was more coherent and calm in our visit.

o   He confirmed she has at least mania/bipolar. There’s a fair chance that that’s all she has, but it’s too early to be sure. He’ll start her on a mood stabilizer (Depakote) and watch. If voices, delusions, and unmanageable behavior persist, he may suggest an anti-psychotic (Risperdal).

o   We agreed to leave her in the nonverbal unit, despite the downsides that she’s aggravated by the other patients, she may learn their dysfunctional behaviors, and she will not have issues fully addressed here that talk therapy would normally target. Reasons to keep her in this unit:

§  He and some nurses already understand some of her talk, in part because of their experience with nonverbals. Other units would not have that experience or a way to effectively include her in sessions.

§  The patients are not high functioning, but they are also not as aggressive, intrusive or predatory as some patients in other units. Other units with higher functioning patients may put Chelsey at higher risk for more aggravation and even direct harm.

§  The unit is not ideal, but it’s not intended as a long-term place for her. Chelsey’s not here for the therapy as much as for the safety and monitoring as her meds are adjusted and she’s stabilized. This unit and this doctor can accomplish those aims better than others.

§  He expects her to be stable enough to leave in 3 days – 2 weeks.

·         Sun, 7/8. Sunday’s visit went pretty well for the first 3 hours, then she had a meltdown. We mostly told stories, and she seemed almost as animated, engaged, and creative as she usually is. She took the stories in dark, negative directions, but nothing as extreme and suicidal as on some previous days.

o   However, she freaked out when it was time to go and she was going to take a shower. She started cursing us with the worst profanity I’ve ever heard from her, hitting, shouting, and laying on the floor like a 2-year-old having a tantrum. She alternated between shouting that just she wanted to die and stubbornly remaining silent. She was furious with us for making her stay alive and prolonging her torture, forcing her to live her worst nightmare.

·         Mon, 7/9. A good day. Chelsey seemed more calm, more like herself. A very good sign.

·         Tues, 7/10. We had another good visit, and she’s progressing. The nurses say she’s doing better relative to being calm and polite. She did wet herself (again) and refuse to get out of the shower (again). She banged on the unit door and demanded to get out during the day, and she crumpled to the floor when it was time for us to leave and for her to go back to the unit. That’s dysfunctional and uncooperative, but it’s also a positive sign. We’re glad she wants out; that’s what sane, rational people would want.

She was mostly lucid and calm throughout the visit. It felt almost normal, and it was the highlight of my day. We told stories and even played a hand of cards while listening to her Zelda music. Most of the discussion was make-believe stories, but she was animated, engaged, and creative like usual. Some of her statements were gibberish or out of touch, but she seems to be closer to reality.

She’s obviously motivated to go home and really trying hard. We talked about what kinds of progress the doctor will watch for as signs of readiness, and she paid careful attention. She’s especially focused on calm interaction and cooperation, even being polite. We pointed out that even healthy people often swear and shout, and that simply using sentences and reality-based comments would be a good initial focus. She crumpled when we were leaving, but then she demonstrated strength and self-control by getting up to say good-bye, wanting so much to show that she could cooperate and be manageable if it would get her home. Sweet, encouraging, and heartbreaking all at once.

This was the first night Beth didn’t cry as we left, although she cried earlier in the day. Overall, progress for everybody.