Hoping for Daylight

"Even the darkest night will end and the sun will rise."          Victor Hugo, Les Miserables

I'm sorry I didn't get back sooner to tell you all how things went last week. I know that while many of you get information other ways, there are some for whom this blog is the main source of information about our family, and I try to keep up for that reason.

Last Monday, Hope was admitted into a facility a few hours from home that has both acute and residential treatment programs. As I said in my last post, she is not stable enough to be admitted directly to a residential program, but we knew that she'd meet criteria for immediate admission into the acute facility. I'll explain what the team in the acute unit is currently doing for her, and then we'll talk about what happens next. (Spoiler alert: We don't actually know at this point.)

Right now, Hope is in a secure, acute facility. That's the highest level of psychiatric hospitalization, and is reserved for individuals who are currently too unstable to be anywhere else. Because of her active psychosis, and daily homicidal ideation, Hope always meets criteria to be at this level. Several people have asked why -- if she is like this all the time -- hospitalization is so pressing now, and is being pursued harder than in the past, when we've sometimes gone months between hospitalizations. The answer is that we thought she was more stable then. We've only known since early April that none of the meds have worked at all, and that she was being dishonest about that. Since we discovered just how on-the-edge she's really living, there has been huge pressure to either find a way to stabilize her, or keep her somewhere more secure for now. Her outpatient providers just don't feel like outpatient is enough for her right now.

The good news is that the doctor who is currently treating her is doing what neither the doctor in the last hospital nor her outpatient psychiatrist would do. He is increasing her Clozapine. If you've been with us long enough to know about this med, you know that it's our best chance. If multiple other antipsychotics fail to help, the best thing you can do is try this med; a percentage of people who have not responded to anything else will respond to this. We started Clozapine seven months ago, have increased several times, and it has not affected Hope's psychosis so far. When two doctors told us that they personally wouldn't go any higher, we were crushed. Of course we don't want to just throw high doses of intense meds at our child! But what else are we to do? We know that if this doesn't work, the chances that anything else will are incredibly low. (This is because the meds in this class are all similar enough that if multiple ones have failed, there is very, very little chance that any of the others would work.) Clozapine is the best option, period. We also know that the official info on this med says that we can go a fair amount higher, so we're not asking for anything outrageous or unsafe. The hesitation by some doctors is her age. However, she is not yet at the max adolescent dose, so we're not trying to get them to do anything that isn't supported by the official info on this med. All we wanted was for someone to be willing to push on up toward the higher end of the range and see if she might respond. Is there a chance that she's in the 10 - 20% of people who don't respond to any meds, or respond only minimally? Yes. That's not only possible, but looking increasingly likely. Are we willing to say that at this point? Absolutely not! Meds are the one and only way to control psychosis. You can't talk someone out of a psychotic state any more than you could talk them out of diabetes; their bodies are malfunctioning in a way that only medication can help. Meds won't necessarily affect symptoms other than psychosis, and most people with schizophrenia are still quite impaired even if they're psychosis free, but controlling psychosis would give our girl a much better quality of life, and would greatly reduce her need for hospitalization. If we hit the point where we can't go any higher on her Clozapine, we'll essentially be giving up on meds. We won't say that, of course. We'll try everything on the market, on the crazy chance that against all odds, one of them happens to work for her. But we know that this is our best hope. That's why it has been such a big deal, and why we're so thankful that the doctor who is currently treating her has been willing to increase it. The bad news in all of this is that we've already done two increases, and she's still showing no effect. The good news is that we're still trying, and still hopeful. 

We don't know how long Hope will be in this acute unit. We're doing all we can to stabilize her. Despite the fact that we've never actually managed that before, it is of course the point of acute hospitalization. We hope that we'll hit the point where the med she's taking is at the right dose for her, and her psychosis breaks for the first time in almost two years. (Now, the fact that she's lied about it before makes it tricky, and I don't know how we'll decide whether or not to believe her if she says it's working. We'll cross that bridge when we get there, though, because right now she's being honest with us about the fact that it's not working.) It is also possible that we won't reach that point, and that we eventually get to where the doctors have tried everything they know to do with her meds, and they simply can't keep her forever. Where do we go from there?

Whether or not Hope has achieved more stability, she'll need to move on from the acute unit within at least the next couple of weeks. The average length of stay there is six to fifteen days, and she's already been there for six. I don't know what will happen, but there are basically three options for where a person could go after discharge:
- Home. This would be an option if she's stable enough to be safe at home with just outpatient treatment. Conversely, we could end up bringing her home even if she's still unstable, but acute can't justify having her there any longer, and a residential program won't accept her. It's so messed up that a person could be denied admission to a residential program because they're too sick, but end up at home by default, which is even lower security. 
- Residential treatment. If she has responded to meds, this type of program could help her learn to live as normally as possible with her remaining symptoms. Even if meds work, they'll only knock out the psychosis, and a person still needs to learn how to function as well as they can with a slew of other difficulties. The highly structured nature and frequent therapy of a residential program could be beneficial. Even if meds don't work, her therapist believes that residential treatment would still be beneficial. However, it would depend on the program's willingness to take her despite her ongoing symptoms, and whether or not they think they could do anything to help her.
- State hospital. This is the one thing we almost never discuss, and we would not go into it quietly. I'm throwing it out here as one of the things that could, in theory, happen to a person upon discharge from an acute facility, but I'm not ready to talk about it for us personally. I have mentioned here, on occasion, that the type of place that could serve a very ill person are the so-called "institutions" that barely exist anymore. Several mental health professionals who have treated Hope have brought up this option, at least in a "have you ever thought about this?" way. Basically, state hospitals are longer term but still high security, which is (in theory) how you bridge that tricky gap between "acute isn't long enough" and "residential isn't secure enough." Just this week, Hope's current hospital therapist asked if we'd ever talked about that option. The answer is that we are not looking at that option. State hospitals serve a purpose. I'm glad that there are still some in operation. Some people are either too dangerous to be in the community without risking harm to the general public, or too vulnerable to be in the community without being easy targets to be victimized in any number of ways. These places are not the horrible asylums that we think of when we hear state hospital, and they're not places where you just park someone for life and drive away. (They are never to be considered someone's residence, and they are always supposed to be actively working toward moving the person into the least restrictive setting.) Anyway, back to our specific situation. Hope is a minor who has parents who supervise her at all times. We believe this makes her neither dangerous enough to need to be kept out of the community or vulnerable enough to need to be sheltered from the community. 

The short version, not that I ever manage the short version of anything, is that we don't know what happens next. We know that we want Hope to be at home with us. We know that professionals whose opinions we value and trust have told us that she needs something more than that right now. We know that we are willing to do anything if we have good reason to believe that it will change her life for the better in the long run. As is so often the case in our lives, right now we can only take one small step at a time, and see how things play out.

I like to try to give specific prayer requests, and suggestions for how to help us. I hope you all understand that I'm not asking for or expecting anything from anyone. I like to include this information for those who ask, and also because I think it could potentially be helpful to apply to other situations, should you happen to know anyone else whose family shares any of our struggles. 

Prayer requests:
- Peace and comfort for all of us.
- Guidance - That we would know what decisions to make, and that her treatment team would know how to best help her.
- Healing. Whether it be through med response or the healing that we do believe is possible, please pray for Hope to be healed.
- Patience, as we struggle with being apart, with not knowing what's going to happen, with our interactions with each other.
- Please continue to pray for our baby boy, as his anxiety continues to be at a high level. We try to keep things as calm and normal as possible for him, but he's ten years old, and he fully knows and understands everything that's happening in our life. That has to be difficult, and during some periods of time, he has struggled with anxiety. Please pray for his peace.

How you can help:
- Local folks: Help me keep my sweet boy busy while his sister is away. He used to occasionally comment that he felt bad for a friend of his who is an only child. That sounded like the loneliest thing to him. Since Hope became sick, things have changed a lot, and they don't interact as much as they used to. He still loves her like crazy, though, and I know it's hard when she's away. All of our regular school-year activities have stopped for the summer, our days are less full (at least with fun stuff) and I don't want him to feel sad or lonely. If you have kids who are friends with mine, help me keep play dates and such on his calendar. Just also try to keep in mind that I'm pretty busy sometimes, too, and that I'm not trying to avoid you if it takes a few tries to figure out a time we can get together.
- Tell me what's going on with you. I love that people ask about Hope, but I also want to hear about you! I don't want to talk all the time. I don't want to feel like my conversations and friendships are one-sided. I'm uncomfortable with feeling like I'm taking more than I'm giving in any situation. Tell me what's up with you -- the good things, the bad things, the mundane things. Please don't think that just because there's big stuff in my life that I don't care about yours!
- Send cards. Our girl's 14th birthday is in eight days. We can't say for sure (goodness knows our life is nothing if not unpredictable!) but there's a good chance she won't be home. There are very few things she's allowed to have in the hospital, but she can have cards, letters, and pictures. I thought it would be really cool to be able to shower her with cards for her birthday, since there is so little else I can do. This is a time-sensitive request, though. They probably need to be in the mail within the next couple of days, since her birthday is Monday, and we'd need to have them by Saturday. You don't have to say anything profound (in fact, she appreciates humor more than mushiness anyway), just the gesture would be appreciated. If you're interested in sending a birthday card, message one of us for our address.

I guess that's it for now. I'll try to be back again soon. Hopefully, we'll have things more settled in the near future, and know where we're headed from here. I hope you're all well, and enjoying the start of summer!