"...at times she was strange and dangerous. But mostly she was sweet and scared and harmless." Harry Potter and the Deathly Hallows, J.K. Rowling
Hope is in the hospital again. That's where we are right now. If you'll give me a bit of your time, I'll back up and go through where we've been in recent months, and how we got here.
When I last updated, it was November. We were concerned that Hope was starting to slide back toward being more symptomatic and less stable. That did happen, but she didn't dip as low as we had feared. She didn't go completely flat, she remained at least somewhat functional, and there was nothing serious enough to warrant a hospitalization.
The time since then has been pretty good. She has been the most stable since the onset of her illness. She has continued to have auditory and visual hallucinations pretty much daily, but they've been mostly mild and fleeting, and she's able to live with them. There has been an increased difficulty discerning the difference between what's real and what's not. This also happens almost daily, and sometimes multiple times a day. She'll distinctly remember things happening that never happened, or have no recollection of things that did happen, but it's been in ways that are minor enough that she could live with it. I mean, she wouldn't be able to take care of herself, but she's been stable enough to be safely at home with us. She has also developed some odd fears of things that she wasn't previously afraid of. Again, though, that's manageable. Overall, things really have been good. Not easy... not what anyone else might consider "normal..." but quite good for Hope. Socially, and in public, she's been doing so well that friends just go on and on about how great it is to see her looking this way.
We're always waiting for the other shoe to drop. It always will. Her illness is far too severe to just coast along forever. And while we always know it can happen at any time, it still catches us off guard sometimes. After ten months out of the hospital (her longest stretch, by far!), we are suddenly right back in the chaos and fear that is often our reality.
We just found out last night that the voice has been back for a few weeks. Random, isolated hallucinations don't threaten anyone's safety, but the one she calls "the voice" is a very different story. If you're not familiar with this symptom, you're welcome to back up and read older entries. (Short version: It's an auditory hallucination that she sort of sees as a separate entity. It gives homicidal commands. Most of her hospitalizations have been because of this voice, which tells her to kill.) She had a hard time bringing herself to tell us it was back, so she's been dealing with it for a couple of weeks on her own. She reached the point where she no longer felt in control or safe, though. From there, the only option was to go to the hospital.
So, here's where our sweet girl is right now. The voice is back. It's telling her to kill. Sometimes that sounds like a good idea. Sometimes it horrifies her. This is a good thing, because in the past, she hasn't really been horrified by it. It tells her she should do it, her brain registers it as something that sounds fun/exciting/amusing, and she doesn't feel any guilt about it. Right now, she's having periods of time where it feels fun or exciting, but then she's hit with guilt, and feels horrified and disgusted that she would have that thought. She feels afraid that she is eventually going to snap and hurt someone, and the voice tells her over and over that she will. This has caused her to become suicidal, as she feels like the only way to ensure that she'll never hurt someone is to kill herself. She cut herself -- not deeply, but probably ten or so cuts all lined up along her wrist -- and then wore a thick bracelet and long sleeves to try to cover it. She wasn't making an attempt on her life; the voice told her to do it, that it would help, that it would let out some of the pain, and so she did. She has a prior suicide attempt, though, and the cutting is therefore very concerning. She says that her brain has been so overwhelmed with the fighting over these two seemingly inevitable outcomes, and she is in so, so much pain. She's exhausted. She's scared. While it is better that she feels guilt and concern over the homicidal thoughts (because that's a normal human reaction, and she hasn't really felt that way in the past), it is so hard to watch her suffer. Last night, she sobbed until she couldn't breathe, and said she's just so tired of having to live like this. There isn't anything I can do to make her stop hurting, and that is the most helpless feeling of all.
Hope's big fear right now, besides the dueling urges to hurt herself or someone else, is that she won't get out of the hospital. She's not so worried about being in the hospital for a few weeks; she's been though that so many times before. She is worried that we won't be able to fix it this time, and that she'll end up in a residential facility. I want, more than anything, to reassure her that it won't come to that, but I'm worried about it myself. All I could tell her was that we'd do whatever it takes to keep her safe, but would fight as hard as possible to get her home as soon as we can. She knows that she was very, very close to residential treatment last spring/summer, and thinks we'll end up at that answer again. The truth is that it's a possibility. We're in a really bad place right now. If you've followed our story for very long, you know that she's med resistant, and has responded only to high doses of the one med they can use in med-resistant schizophrenia. Nothing else has had any effect on her symptoms at all. Well, we are probably at the very ceiling on this med. Multiple doctors were unwilling to go to even the point where we are now. We found one that would, and it made all the difference for her. She was finally free of the voice, which is pretty much the difference between being able to be out of the hospital or needing to be inside. The last time her clozaril level was drawn (that shows the level that's actually in her blood), it was at the very top of the acceptable range. We were so relieved that it worked, because there was really not much else to be done if it didn't. Well, now here we are. It's no longer working. Our best hope is to increase it, because there aren't many other places you can go after this med, but we don't know if it can be increased. They've already ordered tests to check her level. The best case scenario is that we find that her levels are lower than last time. She's on the same dose, so the amount in her blood should be the same, right? But she's a teenager, and that means changing hormones and body chemistry. It's possible that she's metabolizing it differently than before, making the level in her blood lower than it was, and giving us room to increase her dose. There's no guarantee that would work, but we would hope that a little bump would get her back across that threshold. If we can't increase, or if we do, but it has stopped working for her altogether, things get sticky. We would start stacking meds, hoping that we could find a combo that works. Some of the meds we'd try are ones she's tried before and not responded to, but there is always a chance that stacked with the clozaril, it might do something helpful. The scary thing here is that some people are just resistant, and sometimes nothing helps. When that happens, they move on to just teaching the person to live the symptoms that they can't get rid of. In her case, because her symptoms are dangerous, it's not so easy to just teach her to ignore them or manage them. We would end up faced with the very real possibility that she would have to be indefinitely in a secure facility. That would break our hearts. The worst thing is that she knows the situation, and she's terrified. Of course, no one is telling her that we might be at the point where nothing is going to help, but she is educated on her illness, and knows that some people are resistant. She also knows that when we've been unable to get her symptoms under control in the past, she's had to be hospitalized, and that we've come very close to longer term placement. She walked into the hospital last night, literally shaking and crying, afraid that she wouldn't get out again. She has lost control of her brain, and is scared of completely losing control of her life.
Please, please pray for our girl. She's so tormented right now. When I visited her tonight, she spent some of the time conversing like normal, and some of the time sobbing, rocking, holding her head in her hands, and pleading for it to just stop. I would try to reassure her that we're not out of options, that we can still try x, y, and z... and she was telling me that the voice was talking over me, arguing, saying that I don't know what I'm talking about, that nothing can fix it, that it's hopeless, that she (Hope) doesn't really want them to get rid of her (the voice) anyway. She just curled up and held her head in both hands and cried. I can't tell you what it feels like to watch your child suffer that way. She says she feels like she's being ripped apart from the inside. And, despite the fact that our circumstances are very different, I rather feel like I'm being ripped apart as I watch her.
We want all the answers. We want to know how this will play out. Unfortunately, all we can do is take things one small step at a time. Here are our steps:
- Step one is that we're hoping for a bed to open up soon. There are no beds available, so she's in a secure observation unit (a holding area, really), rather than on the regular adolescent unit. Beds are in short supply statewide right now, and we expect it to be days before any movement happens. Meanwhile, she's crammed in a small waiting area with twenty other kids. Eight of them slept in a hallway on mattresses on the floor. (Within the secured area, with staff watching them. So she's safe; it's just a crappy situation.) There is always a shortage of adolescent beds, and certain times of the year, they're just overflowing. The end of the year, with schools pushing testing and stuff, is one of those times. Anyway, we're hoping that a bed will open up at the facility where she is, and that she won't have to be transferred to another place, which can happen if a bed opens up somewhere else first.
- Step two is hoping that when she does get into an actual unit, we have a doctor who is both knowledgeable and willing to try whatever it takes. She is an anomaly. The admitting doctor told me last night that honestly, he's seen very few people as ill as she is, and never anyone near her age. We know this. We hear it all the time. Unfortunately, it means that no one knows what to do with her. What is the standard of care for a 14 year old female with med resistant schizophrenia and the type and severity of symptoms that she has? There is no standard of care, because it doesn't happen! We were talking last night about possibly needing to think outside the box, and then someone sort of joked, "Who are we kidding... There is no box." We need to get the right doctor. Doctors who are familiar with schizophrenia don't see kids, and doctors who see kids don't see schizophrenia, and no one ever knows what to do with our unique girl. I told her last night that in a world of horses, she's a unicorn.
- Step three is getting an idea of where her clozaril level is right now, so that we'll know if we can increase that med.
- Step four is to either increase the clozaril or start the process of stacking meds to see if she responds to any combo.
- Step five is to try to get her home as soon as we can safely do so.
Throughout all of these steps, we will pray, cling to hope, lean on each other, and pray some more. I remind myself that there is always hope. There are several reasons that I chose Hope as my sweet daughter's pseudonym for this blog, but one is simply to remind me that hope is ever-present. We hope and pray for the best in this situation, as always.
