And Finally, Some Good News

Rejoice in hope, be patient in tribulation, be constant in prayer.          Romans 12:12 (ESV)

Our life these days never ceases to surprise us. The one thing we know is to always expect the unexpected, and somehow, we're still caught off guard. Every once in a while, though, that's not a bad thing.

Early last week, and after the fourth increase in her antipsychotic, Hope stopped hallucinating. If you're at all familiar with our story, your first question is probably how we know that she's telling the truth this time, right? Well, she went from being her usual, coolly removed self to being a sobbing, emotional wreck. In the past, when she's told us that she's not hearing the voice, she's said it casually. This time, she completely melted down. She (who shows emotion very infrequently these days) cried for three days. She panicked. She said she's not ready for the voice to be gone, and that she doesn't know what to do without it. We were worried that if meds ever did start to work for her, we wouldn't know how to believe that she's telling the truth, but boy, was it clear! It has now been 9 days since her last auditory hallucination, and 8 days since her last visual hallucination. She also reports that she no longer feels homicidal.

I can't even believe that I am writing these words, after such a long battle to get to this point, but our girl appears to be psychosis free for the first time in almost two years. I still can't quite grasp that. (Side note: When I say psychosis-free, I guess I really mean hallucination free. Delusions are also psychosis, and we don't actually know where she is right now, as far as grasp on reality, or whether or not she holds appropriate beliefs about the world in general. It hasn't been the primary focus of our efforts, as it simply isn't the most important right now.)

Once this change happened, we had to start reevaluating what that means for her current placement. Residential treatment was recommended because her providers believed that outpatient wasn't a high enough level of care with the symptoms she had. With a change in those symptoms, we had to rethink that. Residential is essential in some cases, but should be used with caution. The kids there have severe behavioral concerns. Many have histories of violence, sexual acting out, drug and/or alcohol use, etc. When you're looking at placement of a kid like Hope, who doesn't have any of the above, you really have to carefully weigh the positives against the potential harm. We had arrived at the point where pretty much all of the providers in her world believed that it was necessary. However, if she is, in fact, hallucination free, is it still necessary? After talking it out with her team at the hospital, and her outpatient team, we determined that she didn't need to be thrown into that situation at this point. We would risk her being either traumatized or hardened by it, neither of which are good for her. We would've done it as a last resort, if she were too dangerous to be anywhere else, but she really does seem to be responding to this med, and therefore not too dangerous to be at home. 

On Sunday, the day before her 14th birthday, we brought our Hope home. She was only away for two weeks, which we've been through before, but this time seemed so much longer. It wasn't just a two week hospitalization; it has been a two month process. She was inpatient for two weeks, then at home but with us working hard on figuring out residential placement for a month, then inpatient again for another two weeks. It has been two months since we were able to just be, and since we were last able to picture our summer happening as a family of four. 

Not to negate all of the happiness above, but life is not all butterflies and sunshine. Our child still has a very serious illness. We rejoice that at least in this moment, she is med stable, but what exactly does that mean? Antipsychotics control psychosis, which is just one component of schizophrenia. There are many other challenges and deficits that remain. Even if Hope does continue to show response to meds, we are faced with at least some of the following symptoms of schizophrenia: executive functioning deficits; deficits in working memory, and organizing thoughts; impaired motor skills; emotional flatness or lack of expressiveness; an inability to start or follow through with activities; speech that is brief and lacks content; a lack of pleasure or interest in life; difficulties with social cues and relationships; neglect of self care... the list goes on and on, and the ones I listed are just the ones we've already encountered in Hope. 

Honestly, even our best-case-scenario for Hope means that life will never be easy. We want to aim high, and help her achieve all that she can, but we know that our goals for her will be different than what we dreamed of before she was sick. All of our goals now are for her to achieve the most normal life she can, knowing that it still won't be "normal." Most individuals with schizophrenia require some form of daily support. It's not realistic to believe that she'll be able to completely manage her own life, but we can do our best to give her all the skills and support she will need to eventually live independently -- with support to manage things, but maybe at least in her own place. Less than 15% of people with schizophrenia are employed. We can give her all of the resources and training necessary to support her working at least part time, though. We know that working provides a person with a sense of worth, connects him or her to the community, and provides life with a sense of purpose. Some of the things that we (her family and her therapist) will work very hard on are: teaching life and self-care skills, so that she has the best chance of some level of independence; educating about the need for medication compliance, so that we lessen the risk of noncompliance in the future, which is one of our biggest long-term worries; teaching social skills, providing ample opportunities to practice these skills, and realistically, forcing interaction, because she pretty much always chooses not to interact when she has an option; educating about the pitfalls of drug and/or alcohol abuse, which is obviously always a bad thing, but is especially common in those with mental illness; watching for signs of increased suicide risk, as different studies show that 20 - 40% of people with schizophrenia attempt suicide, and around 10% succeed (this is especially scary for us, as Hope has already attempted once.) Life will never be easy for Hope, and this means that life will never be easy for us. Sometimes, I'm exhausted by that thought. Then I remind myself that if the only options are working hard every day to support her, or living life without her, it's really a very easy choice. 

As far as where we are at this moment, I suppose we're just trying to get our bearings. This is the first time we've seen Hope hallucination-free in almost two years. She hasn't just gone back to how she was two years ago, though, because her illness is still so all-encompassing. We don't know how long she'll be stable, what will happen when the psychosis inevitably returns (will she be honest and let us know right away? will another quick tweak get it back under control? could she become very dangerous before we have any idea that it's happening?), and how we handle it when it does. We're trying to put together treatment plans for many other things that we just couldn't focus on when her psychosis was the top priority for so long. We're adjusting to having her back at home, which is what we wanted, but at the same time, is not always easy.

At this moment in time, we have a child who is very, very depressed. She is grieving the loss of the voice that was her companion for a long time. While we understand that this voice was a result of a brain malfunction, she experienced it as a separate person, and was really the most important person in her life. Now that it's gone, Hope doesn't know what to do with herself. Her grief has turned from frequent crying to a deep, quiet depression. We understand that she must go through the same grief process that accompanies any loss. Meanwhile, we're watching very carefully for med compliance (she has stated that she knows she could fix it if she'd just stop taking the meds, and she has been noncompliant in the past by both checking meds and by purging after taking them) and watching for any signs that she may harm herself (again, she's tried it in the past, and she is incredibly depressed and hopeless at the moment.) She moves very little, speaks very little, and when pushed to do either, she's not very pleasant. She's not engaging much right now, but occasionally something will distract her enough to get her briefly out of her shell. We're thankful for those times, and hope that they will become more and more frequent as she works through her grief. 

We would appreciate prayers for: continued stability and further healing; our sweet boy, who is still struggling with his anxiety; our stamina, as this race seems endless, and sometimes we are so tired; financial provision, as this has been such an expensive year already; a peaceful home, as life with Hope can be stressful sometimes, and we didn't expect her home so soon, and while we're happy for that, it is an unexpected adjustment for her parents and sibling. Most of all, we want to thank you all for your faithful thoughts and prayers. While there is a long road ahead, and our days are still hard, we know that what we've just experienced is a huge, huge deal, and there just aren't enough words to thank all of you who are with us on this ride. Much love to you all!

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!

Curveballs

"This is my family. I found it, all on my own. It's little, and broken, but still good. Yeah, still good."          Lilo & Stitch


Well, as I said in my last post, our life moves very fast sometimes. Our family definitely has more than our fair share of chaos, but we ride it out together, and we're thankful for those of you who are willingly along for the ride.

We finally got word that all paperwork had been received, and that they were ready to schedule Hope's admission. I packed up all of the personal effects on the provided list, gathered all of the various documents and things we would need at admission, lined up dog sitters, and booked a hotel for a couple of nights so we wouldn't have to drive there or back on admission day. On Thursday, we made the five hour drive, checked into the hotel, let her choose a restaurant for dinner, spent some time in the hotel pool, and tried to come to terms with the fact that we were just hours from starting our longest (both time and distance) separation ever. On Friday morning, full of nerves and dread, we went to the facility.

On arrival, we met with the admissions director, and she explained the process. First, she said, Hope would need to be evaluated by a psychiatrist. As I mentioned in my last post, they can't ask our insurance company for approval until they've conducted their own evaluation, because they have to present that assessment to them. We spent over an hour in what should've been a fairly brief psych evaluation, and knew almost immediately that it wasn't going well. The doctor pretty much told us so, but took it to her boss for discussion anyway. Apparently, he agreed.

In the end, we were told that they couldn't admit her. The person who received all of our records, accepted her, and scheduled her admission was the admissions director. She knew that Hope met multiple points of their exclusionary criteria, but still thought they could help her. A psychiatrist had never reviewed her files, and wouldn't have let us get as far as we did. They told us the same thing everyone tells us; she needs treatment, but they can't help her there. They said she was very close to the point where they would've had to call someone to transport her to an emergency facility, but they didn't want to do that with us so far from home, and accepted our promises that we would do that if we thought we needed to. Because we have done that on eight different occasions, they trusted that we would, and that we could determine where that line is. The psychiatrist told us that we should continue to pursue getting her into some type of long-term treatment, but admitted that she didn't know of any programs that would be both long term and secure enough. (As I said in my last update, acute programs are secure, but short term. Residential programs are long term but less secure.) We discussed the fact that "institutional" hospitals barely exist anymore. She said that she doesn't actually know of any, but that there have to still be some somewhere, and that we should keep looking for something like that. *sigh* Thanks for the help, doc.

As far as their program, they gave us several reasons they couldn't accept her:
- They couldn't risk the safety of their other kids by having her there. They have plenty of kids who act out aggressively and have a history of fighting, but that's different than a person who looks you in the eye and calmly states that she's entertained homicidal thoughts as recently as that very day (every day, in fact), and that the reason she wants to kill someone is just because it sounds like fun. In a place with extremely high security, you know that someone couldn't really hurt someone else even if they tried, but that brings us to the next point...
-  Their facility is not secure enough for someone like her. They think she needs to be somewhere that's "hardware secure," and while these kids are supervised, the program is very outdoorsy, and therefore not secure enough. They live in cabins that are more like home or summer camp than a psych facility. The doctor mentioned that kids at this facility could potentially get their hands on things that you can't in a locked hospital ward, like kitchen tools or utensils, scissors, or things like rocks and sticks. 
- Even if security wasn't an issue, they didn't think they could help her. They said while their program does treat mental illness, they mostly have kids with behavioral problems and/or milder illnesses. (Because, well, pretty much all illnesses you see in young people are milder than hers.) They give kids some counseling, some meds if necessary, some structure and responsibility, and help them learn respect, better coping skills, help them heal from trauma or fractured families, help them work through negative self-images, etc. You know, things that troubled teenagers might face. They are not prepared to handle someone who is, in their words, as "chronically mentally ill" as our child is. She is a whole different level of patient, and they couldn't see how they might be able to do anything that would affect her life in the few months they might have her. This is the problem we've found everywhere she's ever been treated. They are used to dealing with adolescent problems, and that's not what she has. The people who would know what to do with schizophrenia, especially med-resistant schizophrenia with especially persistent psychosis, work in adult hospitals. She is years from being able to be treated in that type of setting.

It was an incredibly frustrating experience. We did everything right. We were totally up front about her illness, so they'd know exactly what they were getting, and could determine ahead of time whether or not they might be able to help her. We sent a huge file full of things like intake and discharge summaries from all of her hospitalizations and letters from her therapist and psychiatrist. Right there, in black and white, was as clear a picture as we could paint for them. Yet somehow, they still seemed surprised by the severity of her illness. Honestly, it was a huge blunder on their part. The admissions director was apologetic, and I was sad for her, because she looked like she felt awful. She took full responsibility for making us get to that point, only to be turned away. I think she really wanted to be able to help this child that no one else can/will help, and I guess she really thought that they could. I wasn't angry at anyone, but I felt pretty crushed to have been turned away.

In the end, this was a resource-sucking dead end. We spent time on this lead. The process took weeks, during which we stopped looking for other options, because they had already accepted her, and we were just trying to get through the long process. I gave so much time to phone calls, emails, faxes, forms, gathering everything they needed, driving to facilities to sign release forms, because it would be faster than waiting for mail and they wouldn't accept fax. We also spent two days away from home, including ten hours of drive time. We spent money on this lead. I purchased things she ended up not needing, because the nature of their program meant that their packing list was very specific. We spent on gas for a road trip, two nights at a hotel, and two days of meals out. We spent on getting them everything they wanted in order to consider her. (For example, we had to pay for things like non-insurance-billable phone calls with her providers, letters that took them time to write, fees for copying records because that was the fastest way for us to get them.) We spent emotional energy on this lead. That resource is just so scarce right now.

I guess I've gone on long enough about the failed hospitalization, though. The burning question is "what happens now?" We drove away from that hospital without a clue. We'd been told that she needed residential treatment, but this place was literally the only residential facility we'd been able to find that would even consider her. Do we keep looking, and if so, where? Do we consider going back into acute hospitalization, and if so, what is that going to accomplish? The admissions director at the failed hospital, along with the gentleman who works for their parent company and had put us in touch with them in the first place, said they'd try to help us find other options. This man's advice, now that we'd been turned away from our only residential hope, was to look specifically at facilities that had both acute and residential programs. An acute hospitalization isn't enough to do anything, and residential programs are all going to tell us that she has to be stabilized before they'll take her. But what about getting her into a place where the acute folks could try to stabilize her, and even if they couldn't, they'd be familiar enough with her case to vouch for her with the residential side of their own facility? Rather than just discharging her with a recommendation for residential treatment, maybe they could help get her into residential. The man I referenced above sent her file to another hospital that's owned by the same company that just rejected us, and this hospital has both types of treatment on the same campus, which we think increases our chances of success. However, it's about 1,150 miles from here, which means either 18 hours by car, or burdensome airfare and car rental. Even if they accept us, which they haven't, that's not a great option. If they were specialists there who actually had significant experience with childhood schizophrenia, we'd do it in a heartbeat. It doesn't appear that they'd be any better at it than any other random psych hospital, though. This hospital was really only recommended because it happens to be owned by the same company, and that's not enough reason for us to pursue something that far away.

What now then? I spoke to Hope's therapist on Friday, and we discussed the idea of looking at facilities with both types of treatment programs. She agreed that that would be our best bet right now. Hope meets all criteria for hospitalization. (She always does, actually. We keep her at home as much as we can, but at any moment, we could take her to any hospital, and they'd keep her.) Any acute facility should be easily willing to admit her, we just haven't wanted to do that again yet. However, if we're looking for a place that could admit her into an acute unit, and then perhaps move her toward a residential program in the same hospital, it's worth doing. At this point, we have no other prospects for getting her into residential treatment. On Friday afternoon, immediately following our rejection from the other program and a quick phone call with her therapist, I called the place that the therapist and I agreed should be our next move. They have licensed clinicians who take calls and help families decide whether treatment there would be appropriate. I spoke to a very nice woman, told her exactly what our situation was, what had been recommended, and about the situation we had just been through. She said that, given Hope's current situation, she would probably not be a good candidate for their residential program, but certainly would be for acute treatment. I was open about the fact that I called them specifically because I hoped that they could bridge the two better than just taking her to any random acute facility, and asked if she thought that was a possibility, and she agreed that it sounded like a good move for us. Does that mean that any of it will work like we hope? Absolutely not. It only means that one person in that hospital understands our situation and thinks they might be able to help us. What else is there to do at this point, though?

Tomorrow, Hope and I will head to this new hospital for a scheduled evaluation. We have packed everything she would need if she were to be admitted, because there is a very good chance that she will be. If they keep her, she'll be a little under three hours from us. We won't be able to visit her daily, like we've done when she's been in hospitals close to home. We won't stay in a hotel near her, like we've done when she's been in an acute hospital a few hours away. Our finances have simply taken too much of a beating to allow that. We have been mentally preparing for a residential stay, though. We knew we would only be allowed to visit so often, and that the distance between us would only allow us to visit so often. Even though this will be an acute stay, we'll just have to treat it the same.  Once she transitions to residential, if she is able to transition to residential, we'll figure out how that all looks. 

It's a difficult situation, and I'm really sad about it this time. I'm never happy about it, of course, but this feels really stressful. Maybe it's just the quick change in plans. There will only be three days between the expected admission to one hospital, and the likely admission to a different one. This plan feels a lot less settled than that one, because it's not the last stop -- it's designed to be a shorter stay, and we'll be working to manage this step while figuring out the next step. I had processed her being in a residential facility, and come to some kind of peace with not being able to see her as often, because I knew that she'd be doing outdoorsy things and would be generally happier than if she were locked up somewhere. Now we're looking at her being in a locked facility, in an acute program that would allow daily visits, and we (the parents who are always, always there, looking around at the kids without visitors and wondering how a parent could just not be there) will only be doing phone calls, because our year has just been too expensive to be able to pick up and stay near her this time. I feel guilty that she'll be in a different setting than she'd expected, and I feel guilty that I won't be there as much as I'd want. I feel unsettled in the fact that I know less about this hospital. We researched it some, before we found the other one, but didn't spend as much time on it. I've already asked about a tour, and they said they'd be happy to let me tour the facility. Still, I just feel so much more conflicted about this move than the one we thought we were making. I know I can't always make decisions on how I feel, though. I'm never going to feel good about putting my child in a psychiatric facility. I hope that seeing the facility tomorrow will help me feel a little better, but I have a feeling that if she's admitted, I'll be a wreck when I have to drive home and leave her there. 

I wish this update was more settled, or more coherent. I feel like I'm probably rambling, and saying way too many words but still not making sense. I really wanted to post an update today, because I know that people love our girl, and want to know what's going on with her. I feel so scattered and broken, though, and simultaneously empty and full-to-bursting with too many emotions. Forgive me for the mess of a post. 

I will do my best to update again very soon, and hopefully be able to give you all a better idea of what this round of treatment will look like. If you're a praying person, we would appreciate prayers as we navigate all of this. <3

In Limbo

"When enemies are at your door, I'll carry you away from war, if you need help, if you need help. Your hope dangling by a string, I'll share in your suffering, to make you well, to make you well."          Gone, Philip Phillips

Another month has passed with no change in symptoms, and little change in circumstances. I'll try to catch you all up on what has happened since I last updated. I'll warn you that this is going to be long. I don't update all that often, and our life moves very quickly sometimes. I figure it's better to tell more, though, and you can read as much as you like. I'm breaking this post down into sections, to make it a bit easier to follow.

Since my last update:

Baby girl spent two weeks in the hospital. Three changes were made to her meds, and she showed no response at all. The only thing that was different this time is that she stuck to her commitment to be honest with us about symptoms, and didn't just say that she was feeling better to try to get out. Every day, she reported that she felt exactly the same as the day before. It was disheartening to see that she wasn't responding to med changes, but at least we got honesty from her this time.

Her discharge was pretty abrupt, and illustrates how difficult it is to get any help in our current mental health system. The psychiatrist assigned to her in the hospital was one who had treated her before, and we were comfortable with him and confident in his skills. He was not anywhere near ready to talk about her release yet, as she still had the exact same symptoms that brought her there. He was off for two days on the weekend, and she was seen by another doctor who also didn't talk about discharging anytime soon. Then, on Monday morning, her regular doctor had a personal issue of some kind and wouldn't be able to come in for a few days. She was assigned to another doctor was called in to cover, and this doctor decided on the spot (after reading her chart, but before ever meeting her!) that she'd be discharged the next day. He reasoned that while she was still hallucinating, she was no longer as dangerous. She came in with command hallucinations; specifically, her voice was telling her to kill people. Once in the hospital, it stopped saying that very often, and mostly told her to do things like lie about the voice, say the meds are working, get them out of there, etc. When asked about it, she said that it always says those things when she's hospitalized, and when she gets out, it resumes its regular stuff. However, this doctor said that because she was having few homicidal command hallucinations, he couldn't justify keeping her there. Despite the fact that we knew she was no better, and that her symptoms would return to their usual state as soon as she was on the outside, she was discharged. Her regular psychiatrist didn't agree with that move, and told us that if we had any hesitation about taking her home, we could just head straight to any ER. She still met all criteria for immediate crisis hospitalization, and would've been admitted. We felt okay just taking her home and keeping her well-supervised while we worked out the next steps, though.

What do we do now?
What we did get from the hospital is a strong recommendation for residential treatment. We knew it was coming. Her outpatient psychiatrist and therapist had both told us that we had arrived at that place, and we weren't surprised for the hospital psychiatrists to say the same thing. We have been unable to stabilize her for almost two years and she can't just continue this way. We have to do something, and there aren't really any other options. Her eight hospitalizations over the last eighteen months have all been in acute facilities, and they've done nothing for her. We were told to pursue treatment at a residential facility, which is a place designed for stays of months rather than days or weeks. It's heartbreaking for us to have to think about her being away for longer, but everyone who treats her agrees that outpatient is not enough for her right now, and that we must do something else.

The process:
Pursuing residential treatment has been a stressful and exhausting experience, and we're still not there. First of all, we were told that private insurance rarely approves it. We dove in anyway, with no choice but to try. We quickly discovered that, for one reason or another, none of the few places in our immediate area would be possible for us, and that we'd have to expand our search and accept the possibility of her being farther away from home. I made calls to many places, talked to many people, and found dead end after dead end. However, there were a few people along the way who were able to tell me that while they couldn't help, they could give me contact info for another person or another facility. I've been so blessed by the people who have gone out of their way to try to help us, when it was really only their job to say that we weren't a right fit for them, and could've just moved on from there. There have been more than a few people along our way who have made phone calls, sent emails, done whatever networking they could do to try to help this unique kid.

What we discovered was that even if a facility looked good enough for us to consider and was in-network with our insurance, we still couldn't get them to consider her. We learned that on top of criteria that patients must meet for admission, places also have lists of exclusionary criteria. In other words, if you have anything on that list, they turn you away. Once we knew to ask about that right away, we discovered that there wasn't a single place we could find that didn't exclude active psychosis. See, residential facilities are designed for longer stays, but are actually a step down in security level. The proper procedure is to use an acute facility to stabilize the person, and then, if necessary, move on to a residential facility to provide the additional support or resources they need before going back to outpatient. An acute facility should be able to treat and stop psychosis, and after that point, you can use residential treatment. What happens, then, when a person has psychosis that won't respond to anything, has been through countless acute hospitalizations, and still has psychosis that hasn't changed in nearly two years? The acute facilities can't keep a person for very long; they're not designed for that. Residential facilities can help with many things, but something as serious as current psychosis isn't their thing. The type of places that people would've previously called institutions, that were real hospitals designed for long stays, are almost nonexistent now, as it is believed that most people do best in community-based treatment. There simply is no place for a person like Hope.

A possibility:
After what felt like an endless series of doors slammed in our faces, we finally found a possibility. Through a chain of networking contacts, we found a person who was high up enough in an organization that he was able to get someone to agree to take a look at Hope's case. She meets exclusionary criteria for this facility, but the clinical director could choose to make an exception, so we hung our hopes on that. We put together a huge file of clinical data; her therapist wrote a long, exhaustive letter, and had a phone consultation to make our case for why she needs this; we went through channels higher than the ones that would've normally stopped us at the initial admissions screening. To our great relief, they agreed to take her... conditionally, though. That's one huge hurdle that has been cleared, but there are more.

Where are we now?
Unfortunately, it's not a quick or easy process. There are multiple steps of paperwork and red tape to get through. Right now, we're paused at the step where they have to get permission from both states for her to get treatment out of state. This is something that not every state requires, but this facility is one that does, so our longest step is waiting for two state agencies to approve it. After we get clearance from both states, we'll be getting pretty close. Well, except that one of the largest hurdles yet is still to come. We still have to get insurance approval. Now, I thought going into this that the insurance step would come early. That made sense in my inexperienced mind. However, the only thing they do in the early steps is confirm that your insurance plan does have coverage for this type of hospitalization. Actually getting approval comes right at the end, because once they get pre-certification, they have to admit within 24 hours. That makes sense, because how can you be certain that a patient still needs it if you approved them weeks ago? So, while I understand why it has to happen that way, it's stressful. We have gone through weeks of trying to find placement, jumping through hoops in the placement process, etc., and we won't know until the very end if our insurance company will allow it. She is such a unique case, with such a rare and severe illness that we are hanging on to hope that she'll be approved. We have a case manager with the insurance company, and she has already made notes in her chart about residential treatment being suggested, and why it's considered necessary at this point, and we hope that her advocacy will help us when we get to the point of actually seeking the approval. After that, there is actually still one more hurdle. They've accepted her based on the clinical data they've received, communication with her therapist, etc., but they have never seen her. When we have everything else in place, we have to take her to the facility (about four hours away), and have her evaluated there. They can still say, after seeing her, that their program isn't right for her. That would be devastating, as we have no other options in sight. Acute facilities can't keep her long enough to help, residential facilities don't want her, and long-term facilities are few and far between, and not a step we want to take right now anyway. Right now, all our hopes are on getting her into this facility.

Why residential?
So, all of that explains the process, but just what are we trying to do for her, anyway? I've had a few people ask me what we hope a residential stay will do for her. That's hard to answer. Our biggest hope is still that she will respond to medication. That really is the only way to manage schizophrenia. Before antipsychotics existed, schizophrenia was debilitating, and those afflicted with it lived in institutions. Antipsychotics are the really the only way to manage the psychotic symptoms, and even with those under control, most individuals can't live completely independently, thanks to the other associated symptoms. If we can't even control the psychosis, though, things get much worse. If you've been following us for long, you know that she's proven to be med resistant, and that we've already moved to using the one med they can use in some cases of med resistant schizophrenia. Even with recent increases, that is doing nothing for her. We're not hopeless yet, though. If we get the right doctors on our side, we can still increase her dose further. Her current psychiatrist won't, and at least one of the psychiatrists we saw in the hospital wouldn't. Some still will, though. It's tough, because this med is used so rarely, and almost never in people her age. However, we have to be aggressive in our treatment, because her illness is so aggressive. The longer a person is left in psychosis, the less chance there is of it ever responding to anything. We need to push this med as high as we can before we give up on it working. We realize, though, that at this point, it may not work. If we can't get the psychosis under control, then we have to teach her to live the best she can with her symptoms. The frequent and intensive therapy, and structured setting, of a residential treatment program is a starting point for that. I guess the answer is that we don't know for sure what we hope to accomplish. All we know is that everyone who has treated her believes that she is no longer okay to be only outpatient right now. We've been doing the exact same thing with no success for some time now, and all we can do is try something different and hope it helps.

How long?
The other question I get often is, "How long will she be away?" I wish I had more answers for everyone, but we really don't know. This is all brand new to us; while it will be her ninth hospitalization, it is the first of this type. The average length of stay at this facility is three to six months. It could be shorter, especially if our insurance company isn't cooperative, if they determine that she's not progressing there or isn't right for their program after all, etc. It also could be longer than that estimate, potentially up to a year. I really don't expect that, because I can't imagine our insurance company allowing it. They'll require the hospital to justify her continued need every seven days, and I can't see them approving it for too long. There's really no way to say, though. Everything about this is foreign to us. All I can say is that I hope she's home soon, but more than that, I want her to be well, and we'll do anything we can to strive for that end.

Gratitude:
I can't begin to express how thankful I am for all of the amazing people in our lives. Countless people have used their time and energy networking with everyone they know that might be able to help us. There have been so many instances of "my old college roommate/cousin/former colleague/church friend is in this field" and "I know someone who knows someone who I think might have some connections to something psych related." Hope's therapist and psychiatrist have both spent their own time and energy trying to find a way to help her. This time around, some really amazing friends took it on themselves to coordinate assistance for us, knowing that we're not ever going to ask for help from anyone. Friends set up a meal train, and we've had a few meals a week delivered to our home, freeing time and energy to focus on other things. Some really cool guys my husband knows decided to chip in and buy a new toy for him and little man, just to add some extra fun and levity to our home. A friend contacted our church (where we have only attended for six months or so, and therefore only know a handful of people, and have only spoken to the pastor and youth pastor about Hope), and the church put out an email to leaders of life groups. These groups have prayed for us, brought meals, offered to do things like yard work to help us out. Friends have offered to run errands, take the little guy for a while, etc. One beautiful friend, who was there right after I got a call from the hospital about the discharge we knew was too early, just cried as I told her. Is there anything more beautiful than that type of raw, honest emotion? Honestly, we've just been blown away by how many people have stepped up and offered to help shoulder our burden this time around. I'll admit that it has often caused me to feel uncomfortable. I love to pitch in and help others out, but I am really uncomfortable being on the other end of that. I'm doing my best to just feel the gratitude and dismiss the discomfort, though. The world is full of so many amazing people with beautiful hearts, and I am so incredibly thankful for each person who has willingly stepped into our chaos and offered to stand with us. My heart may be awfully battered right now, but it is also so, so full.

Prayers:
People ask how they can pray for us. First of all, every prayer is appreciated. Knowing how many are carrying our family in their hearts and pleading on our behalf is humbling. For those of you who like to pray specifically, we ask first of all for healing. We know that science doesn't have a cure for schizophrenia, but we know that God is bigger than all of that. We don't know what the plan is for Hope's life, or for ours, but we pray that if it is in His will, that he will bring healing. We ask for guidance. It's hard to know what to do in such unfamiliar territory, and Hope's case is so unique that we can't really even find professionals who know what to do. No one on her care team has ever treated someone like her, and our family has never navigated these waters, so we live in constant uncertainty of what to do next. We ask for peace. We are exhausted, and still so far from anything that looks like rest. We ask for patience. Answers come slowly, and sometimes not at all, and it is so hard to just wait, when all we want is to know how this is all going to play out. We ask for prayers for our sweet boy, "Isaac" as he is known on this public blog. I don't talk much about him here, as he's not as comfortable with sharing as Hope is, but he has again been struggling. This is a hard life we're living, and while he sometimes seems to take it all in stride, he has been hit with some very difficult periods as well. We're in a hard time now, and ask that you keep him in your prayers. Lastly, as always, pray for peace and comfort for Hope. I can't imagine living just twelve normal, healthy years, and then having your mind turn on you. I can't imagine learning that you have a very serious illness that significantly decreases your chances of ever being able to care for yourself or live a normal life. I can't imagine being essentially a bystander to your own life, as you watch everything around you and inside you change, and finding yourself unable to change it and too detached to even care most of the time. As hard as it is to be us, I can't imagine how it feels to be her.

Thank you all, once again, for being a part of our story. It's a crazy life, and I would understand if people ran from the chaos. Some have, but more often, people have willingly stepped into the chaos. I am still blown away every time someone (especially those we've just met or don't know well) asks how they can love us, serve us, help shoulder our burdens. As I said before, our hearts are very full. <3

I'll try to update again as soon as we know anything newsworthy. We hope that there will be progress on the residential front within the next week or so, and when there is, I'll be sure to fill you in on the details. 

Upside Down

"She is made up of depths even the ocean couldn't fathom."

As many of you already know, Hope is in the hospital again. This is the second time since I last updated here. She was also hospitalized in late January, but it was just for a few days, and we thought it was just a brief hiccup. Right now, we are processing the fact that things are very different than we believed them to be. 

Have you ever seen a movie where you watch everything unfold, think you know what's happening, and then late in the movie, they throw something at you that tells you that nothing was what you thought? You have to think back and apply what you now know to everything you saw, and understand what happened now that everything is completely different than what you thought it was. That's where we are right now.

I've written before about different categories of symptoms -- positive, negative, and cognitive. I've explained that while negative and cognitive symptoms affect Hope's quality of life, and ability to care for herself, the thing that matters most is that we control her positive symptoms. Those are the things that can make her potentially dangerous, and those are the things that could force longer-term hospitalization. The good news is that positive symptoms are usually the ones that respond best to medication. If you look back at my most recent update, I said that the positive symptoms were responding well, and while it's not all we'd hoped for, it was the thing that mattered most. 

And now we arrive at the turn-everything-on-its-head moment that I told you was coming. Hope has just admitted to us that the voice she hears has never been gone, nor have the homicidal thoughts, though they vary in intensity. No medication, including the current one, has affected those hallucinations or psychotic symptoms at all. If you look back at her story, you'll see that we didn't know she heard any voices until nearly a year after the onset of her illness. If you remember, she said the reason she didn't tell us is because she didn't want it gone, and she knew we'd use meds to take it away. What we now know is that she immediately regretted telling us, because she really didn't want it to go. So, as soon as her meds were changed, she told us it was gone, and led us to believe that the meds were doing their job. She says she's always known that telling us is the right thing to do, even thought it doesn't feel right to her, and so she's always felt guilt about living a lie and hiding symptoms. That's why, a few months later, she told us that the voice and thoughts were back. She couldn't quite make herself tell us that they'd always been there, but we thought it had broken back through, and that we needed another med tweak to get it back under control. She's done that same routine, where she tells us it's back again, several times now. The guilt builds up and builds up until she eventually says she's hearing those things and having those thoughts again. This time, though, she fessed up to the fact that it's been a charade all along. For nearly two years, through half a dozen different medications and seven hospitalizations, this voice has been constant, and the homicidal thoughts, while varying in intensity, have been there.

Some of you may be wondering why this is such a big, catastrophic deal, rather than just the latest bump in our ride. Well, basically what has happened here is that we are becoming aware of the fact that we may not be able to fix this. She failed to respond to multiple atypical antipsychotics, and to combinations of those with mood stabilizers and antidepressants. Once she had failed multiple drugs, we were told that the chance of her responding to anything else in that class was very, very low, and that we had to make the move to the one thing they can use in med-resistant schizophrenia. We knew there was a chance she wouldn't respond to it, but more than half of people who have failed to respond to anything else do respond to Clozapine. We were cautiously optimistic. When she told us early on that the voice had completely disappeared, we were ecstatic! We had finally found something that would help our girl! When she told us a few months later that she was hearing it again, we just thought that we probably hadn't quite hit the right dose initially, and that it just needed to be tweaked. Sure enough, a quick adjustment was all it took for her to report that it was gone again. Except that we now know it was never gone. Even the last-chance drug that we were hanging all of our hopes on didn't work.

We're not done trying to help her with meds yet, but there are few options left. Going back to a regular atypical antipsychotic would be senseless. The options are to go higher on the Clozapine, or add another med in the hope that the combination would be better than the one alone. The admitting doctor we saw yesterday was not comfortable increasing the Clozapine any higher, and recommended adding a second med. That's as good an answer as any, and the med he recommended was one of the few that we might expect to be suggested, so that's what we're trying. This med happens to be one that she's taken before, and it didn't seem to help, so we know it's a long shot. But the way it interacts with the other one she's taking could be different than before. We know our chances of managing with meds are getting slimmer, but we always have hope.

I'm sure at least some of you are wondering what happens if the meds don't work. The specialist we saw last fall told us that some people just don't respond to meds. Sometimes, all they can do is take a person off of all meds, and because they can't eliminate the symptoms, they use therapy to teach the person to live with the symptoms. Even the most well-controlled schizophrenia is difficult to live with, and if you're a person who has to ride out uncontrolled schizophrenia, life is very hard. It's a disease of remission and relapse, and there would inevitably be some very hard times. With the severity of Hope's illness, it would be incredibly hard to just have to live that way. We've already seen cycles where she's gone completely flat and withdrawn, and been barely functional cognitively. If she is unable to be stabilized with meds, her life will be heartbreakingly hard. Unfortunately, it gets worse, though. Hope is a rare person whose voices are homicidal and who has homicidal ideation. If we have to teach her to live with her symptoms, it's not as simple as just teaching her to ignore a voice that narrates her actions, or to pay no attention to the two CIA guys that follow her around. She is now in her eighth hospitalization for being potentially dangerous. How can she ever live free, with a voice urging her to kill someone, and her brain telling her that it would, in fact, be fun to do so? She's never actually tried to harm someone, and maybe she never would, but it's a scary prospect. We've always known that our best bet is finding a way to make those symptoms go away with medication. Facing the fact that she just has to live with them would be crushing. I don't know what that might mean for her future.

I'd love to be able to let you all know what our plan is, but honestly, we don't have one. Her therapist believes that a longer-term hospitalization may be necessary. We're not talking forever, but a few weeks to a few months maybe. The case can be made that since she is sicker than we thought, more resistant than we thought, and less honest about her symptoms than we thought, we do need to do something bigger than we've done in the past. On the other hand, our insurance company can say that med changes and therapy can be done outpatient, and that she's not imminently dangerous enough to require in-patient. I mean, yes, her brain keeps telling her to kill someone. However, it's been saying that for a long time, and she hasn't harmed anyone. That may be a gamble they're willing to take. Right now, she's in the hospital. There is a possibility they'll say that despite this new information, she's not currently dangerous enough to need to be there, and send her home soon. There is also a possibility that they'll look at the bigger picture and decide that since we've never been able to get her stable, despite two years of our best efforts, and because she is telling them she's feeling homicidal, she needs to be in-patient somewhere for a bit. As strange as it sounds, those incredibly different outcomes are both quite possible. We're in a really uncomfortable limbo at the moment, as we wait for the doctors at the hospital to decide what to do. After they come up with a plan, we take that plan to her outpatient providers and decide if we agree, and if not, we regroup and figure out the best way to help her. 

I know this is very long already, but I want to address one more thing. I've mentioned quite a bit here about Hope's homicidal ideation, and that's not something I address very often. It's really, really hard to put that out there. While I want people to know what we're dealing with, and understand exactly why her illness is such a uniquely big deal, I don't want people to judge her. I don't want anyone to think less of her. Our Hope is an incredible person. Her heart is kind, but her brain is sick. These thoughts are not her own. I know that's hard to grasp, but it's true. A comparison that might make more sense is how a person with Tourette's might yell obscenities or racial slurs that they would never say otherwise. It's not proof of a closeted racist, it's proof that a malfunctioning brain is a very strange thing. Our sweet girl has a beautiful heart, but her own brain has turned against her and started telling her all kinds of strange things, one of which is how fun and amusing it would be to kill someone. It is important that people understand that she has never harmed anyone. It is important to me that people understand that they don't need to be afraid of her. No one who treats her is afraid that she's just going to publicly attack someone one of these days. Her thoughts of hurting someone are very specific, and she's been very clear that she would not just pounce on someone in public, where she'd be immediately stopped and apprehended. I promise you that I am not endangering you or your children if I bring her to a class or activity where you are, or if you see us at the mall. She is never left alone, even at 13 years old. She lives in a house where anything that could possibly be used for harm is kept in a locked closet. She sleeps in a bedroom with an alarm on the door, so she can't open it at night without alerting us. We spend every moment of every day thinking about and planning for her future, so that we can be sure that she, and those around her, are safe. Right now, though, we don't feel that there is any risk in letting her do the few well-supervised and well-structured things that she does. I wouldn't gamble with the possibility of her doing something I'd have to live the rest of my life with, and I promise you that if I thought she was unsafe to even interact in public, I'd keep her away. Please don't fear her. Please don't shun her. Her mind is doing so many very strange things, but her heart is good. Her life is a nightmare, and her illness is unfamiliar to most, but ultimately, she's just a 13 year old little girl. My heart is raw from discussing details that I know will make some of you recoil and some of you fearful, but I ask you to please try to tune your hearts to compassion, because that's what she needs most. 

As always, thank you all for the prayers, texts/calls/emails/messages, and offers of help. We appreciate each one more than you know. Sometimes it's hard to just keep breathing and moving forward, and we know your prayers are carrying us. Every kind word strengthens our battered hearts, and we are thankful for every single person who God has placed in our lives. 

Keep Calm and Carry On

"Hope is being able to see that there is light, despite all of the darkness.”     Desmond Tutu

“So, how is she doing?” That’s the big question of our lives these days. Honestly, the reason I haven’t updated yet is because it’s a hard question to answer. The very shortest version is that she’s better than she was, but she is still not well. If you have some time to spend with me, I’ll give you the fuller version.

Hope was in the hospital for 15 days. We knew hospitalization was coming this time, but it was still chaotic, at least in the beginning. We thought they'd work out a plan for starting the new med, let us know the details, and we'd just head on over and check her in. What actually happened is that when we met with her psychiatrist, she determined that Hope more than met all criteria for an immediate crisis hospitalization. (Really, she never should have been discharged while as symptomatic as she was at the end of her previous hospitalization. We knew this when they discharged her, but that doctor was the single one we've seen in all of this who we felt did not care for Hope properly. That's a different story for another day, though.) On this day, we were supposed to see her regular psychiatrist for the first time since the specialist appointment, and discuss treatment going forward. What happened, though, is that she sent us straight from her office to the ER. There was no prior working out of details, no guarantee that the hospital folks would do what we wanted them to do... we just had to get there and hope they'd agree to help with what the specialist recommended. If not, it would have been a fight to get them to let her go, after they'd already determined that she was dangerous and needed to be committed, so that we could take her somewhere else.

Enter Dr. S. He took good care of Hope, and we liked him, though he wasn't exactly warm and fuzzy. He was bluntly honest with us and was very grim about Hope's illness, symptoms, and prognosis. He was alarmed at a particular manifestation of her psychosis. It's rare that it takes this form, and when it does, the person usually feels guilt and distress over it. She does not have those expected feelings, and is shockingly casual about some really disturbing stuff. He was alarmed at how loose her grasp on reality was, and at the length of time she’d been delusional without it breaking. He said that, quite frankly, if there were ever a case for a person to be institutionalized (which they just almost never do anymore), it would be Hope. He wouldn’t even discuss the topic of discharge until we could see whether she would show any response to this med. While all of that sounds bad, it told us that he understood the situation. If he hadn’t been alarmed, we would have felt that he didn’t have a proper grasp on things. Anyway, Dr. S. agreed to start the new med that the specialist and Hope’s psychiatrist agreed was needed. He wasn’t very familiar with it, so he spent time researching it. He knew that the staff wasn’t familiar with it (as she was in a child/teen unit, and it’s rarely used in this population), so he made sure they were educated. He had a pharmacist sit in on treatment team meetings during Hope's stay, so that they could get her input on things, and so that the entire care team would understand how to monitor her, what to look for, etc. I believe he was just the right doctor for us in this situation, and I am thankful that things went the way they did. 

Hope’s most serious symptoms have responded to the Clozapine. This is amazing news, as it was our last-hope medication after the failure of others. It is worth pausing for a moment to give thanks for the fact that her psychotic symptoms are much better than they were. She reports that she is currently not hearing any voices. (It’s important to keep in mind that she hasn’t always reported symptoms accurately, and has hidden things so that we couldn’t take away symptoms that she didn’t want to lose. However, we can only take her word for the things we can’t see.) There has been a significant decrease in the violent ideation. She also no longer believes that she’s stuck in a dream. Those three big things are the ones that we most needed to respond to this med, so that she would be safe enough to not require long-term hospitalization. In this way, the Clozapine has been a smashing success, and literally a lifesaver.

Why, then, am I unable to just say that she’s doing great? Unfortunately, it’s not that simple. There are many other ways in which she’s still not well. Despite the above, Hope is still psychotic, meaning that her grasp on reality is “off.” She can hold a coherent conversation, and look relatively “normal” on the outside, but if you go deeper, she has beliefs about the world that are simply not in line with reality. She is still afraid of being harmed by a particular type of inanimate object. She believes that all people believe the same things she does, and that the rest of us just suppress certain thoughts and desires due to societal pressure. (I’m not going to go into specific detail right now, but it is way outside the “normal” human experience.)

In addition to psychosis, a positive symptom, Hope still has a slew of negative and cognitive symptoms, though some have improved to varying degrees. (If you’re not familiar with the categories of symptoms, see my previous post or do a quick search on schizophrenia.) She does not have the extreme flat affect that she had a month ago, but she does have a blunted affect. She is still quite withdrawn. Not only does she not have a desire to be around people, she actually struggles with having to do so, and becomes agitated easily. (She has even stopped the one thing she had still been able to find some satisfaction in – volunteering at an animal rescue. The last time she tried, she stayed only ten minutes before calling me to come and get her, because she just couldn’t stand to be around all those people. In the weeks since, she just hasn't gone back.) She is oblivious to hygiene and personal care, and we have to make sure she takes care of herself. (We’re even on the verge of a shorter hair cut, because she keeps letting it get matted, and I have to brush it and take care of it.) She has no ability to start or maintain any activity whatsoever, and doesn’t find much happiness is anything. She still feels like her head is foggy, like she can’t concentrate on things like she used to, and we still have to allow her to do school work in small bursts that she can tolerate. Her thoughts still process completely differently than they did before all of this, and her vision is still “off” in a way that makes everything look sort of surreal. She forgets things easily, she doesn’t notice things around her (she’ll knock something over as she walks by, and it doesn’t even register, or something will happen that everyone else reacts to, and she’ll just be sitting there, oblivious), she does things that don’t make logical sense (last night, at dinner, she hollowed out a dinner roll and put soup inside, and then seemed surprised when she bit into it and soup went everywhere.) She is definitely not her old self, in really any way at all. One of the most frustrating changes is that she's irritable, easily agitated, and frequently snaps at people. Hope has always had a laid-back personality, and it is just not like her to be so unpleasant. Several people have commented that she is a teenager now, and I won't discount the possibility that it could be a part of it. However, she physically matured very early, so it's not like being hormonal is a new thing for her. And yes, she's also under a great deal of stress, with such a serious diagnosis and so many changes to deal with. I'm sure that's a factor as well. It's probably a combination of the illness, the teenagerness, and the life situation. I don't fault her for it, but it sure is difficult.

Despite all of that, there have been some improvements. In addition to the improvement in psychotic symptoms that I already mentioned, some of her other symptoms are less severe than they were. I mentioned that she doesn’t find much happiness or pleasure in things. That’s true, but not on the same scale it was. She had been mostly sitting around, just staring, for hours on end. Now she often plays video games or watches gamers on YouTube. It’s not as good as interacting with people, or getting physical activity, but we allow more than we would if she were healthy, because at least she’s not just in her own head all the time. She had been very, very quiet, and is now talking more than she was. She even initiates conversation sometimes, instead of only responding. It’s still not back to normal, but it’s something. And, hey, at this point, I don’t even know what normal is. The biggest thing to me is that she sometimes smiles or laughs. There was a period of time where she didn’t really, except for an occasional awkward forced smile. There are times now when she laughs or chimes into a conversation with a sarcastic joke or remark, and I’m like, “Hey, there she is. I know that girl.” She does have some good days, or at least parts of days. “Good” is relative, of course. She’s still a heartbreakingly different version of herself. I try hard not to focus on that, though. When my mind wants to focus on how sick she still is, I try to make myself remember how much better she is than she was just a month ago.

This is long already, but I wanted to also give you all an update on how she’s doing physically. She is tolerating the Clozapine really well. She’s on weekly blood draws for at least the next six months, after which point they’ll be able to space out a little more. She’s had various cardiac tests, and will repeat those in a few months. So far, her white blood cells look good and her heart looks good, and those are the big things. There are minor side effects, but she’s been on various antipsychotics for more than a year, so we’re no stranger to those. In all, it’s going very well.

I would love to leave you with more than an unsettled half-update, but that’s where we are. We don’t know if more time on this med will result in more improvement. It’s not uncommon to continue to see increased effect over the first few months. On the other hand, the onset pattern of schizophrenia is that it tends to worsen for a few years after the first break. She’s not even a year and a half in, so there’s a good chance we haven’t seen the worst of it. (That’s a scary thought, given that she’s one of the sickest patients who most of her care providers have ever seen.) Then again, most people don’t get treatment that’s this aggressive this early, and we hope that could mean we’ve headed off some of that. I can't tell you what we're looking at long-term. I've said before, and you all know already, that her prognosis is poor. The specifics of her illness don't give a very hopeful long-term picture. We're doing all we can, though. We're setting her up with every possible resource for success. Her therapist always reminds me that in any set of data, there are the outliers, and we're planning for her to be the outlier. It's all we can do. We have the realistic knowledge that even in her best, most stable times, she may not be able to be independent or care for herself, at least without significant support. On the other hand, if there's anything we can do to increase the possibility of her living the most normal life possible, we're all over it. 

I say it all the time, but we appreciate every prayer, every kind word, every bit of support from the people in our lives. We have essentially lost our child to this horrible illness, and now spend our time, our resources, our lives caring for what feels like just a strange, hollow shell of her, all while mourning the person she was and would have been. There are no words to describe the toll on us, or what a struggle life is right now. Knowing that she is loved, that our family is loved, is priceless.