Unwell

"But I'm not crazy, I'm just a little unwell. I know right now you can't tell. But stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care. But soon enough you're gonna think of me, and how I used to be." Unwell, Matchbox Twenty

So...Hospital. Again. Here's the story...

We were at a restaurant last Saturday night, celebrating the finish of the kids’ spring play. Suddenly, Hope stood up with a panicked look on her face, and said, “I can’t swallow!” She is usually very controlled in public, but she was clearly so panicked that she didn’t consider the fact that she was jumping up and down, pacing, and talking loudly. She kept saying that she couldn’t swallow. She was breathing, because she was talking. She was picking up her drink and clearly drinking it. She had already finished eating and wasn't trying to eat anything when it started. But she kept saying that she couldn’t swallow. (She did acknowledge that she could swallow her drink, but that she couldn’t swallow otherwise.) Fortunately, we were out with some extended family, including an MD and an RN. The doc took her outside to try to calm her down and get to the root of the problem. I gave them a few minutes and then followed.

I learned that since shortly after her last discharge, Hope has been living with constant terror because she knows she’s dying. Not eventually. Not soon. Like, now. She sits around all day thinking of nothing else. This day will be her last. She will not wake to see another. She’s not certain of the method or exact timing, but it will be very, very soon. She understands that most people don’t know in advance when they’ll die, but says that because her brain works differently (sees and hears things others’ can’t) hers is able to tell. It is her body, and it knows it’s about to die. There is no amount of rationalization that can convince her otherwise, because unfortunately, you can’t reason a person out of a delusion.

Back to the scene at the restaurant. She was sobbing, pacing, and unable to calm down. She knew for certain that she was dying. She’d known it was coming, and this was how it was going to happen. We hurriedly took her home. When she got out of the car, she sat down in the driveway, held her head in her hands and sobbed with a depth of grief and terror that broke our hearts. Then she lay back on the driveway, and just screamed. Her dad and I spoke as reassuringly as we could to her as we stood helplessly by. She wasn’t calm enough to go inside, so I offered to walk with her. We walked up and down our street in the dark, just breathing, for a long time. She cried and cried, and as wave after wave of terror came over her, the cries would turn into panicked wails. Eventually, I convinced her to come inside and try just sitting quietly. She continued to cry, and we continued to reassure her that everything was okay. We told her that even though she didn't think she could, she was, in fact, swallowing. We told her that even if she couldn’t, it wouldn’t be a life or death situation; that there are people who are alive and well without being able to swallow. We assured her that it wasn't a physical problem and that her brain could do even things as strange as telling her she can’t swallow when in fact she can, and compared it to things like other hallucinations and delusions and phantom pains in amputated limbs. We said all of the things that might help a person come to a better understanding of the situation, if the person’s brain worked properly and was able to reality test things in an appropriate way. It didn’t matter. To her, none of that evidence is stronger than the fact that her body knows it’s dying. Eventually, she started saying that she was exhausted but too afraid to go to bed. We brought a mattress into the living room where she could fall asleep supervised, and promised that either mom or dad would sleep on the couch.

The constant terror of dying continued, along with periods of insistence that she can’t swallow. She spent the next few days crying off and on, and sitting around looking miserable the rest of the time. I took her to see her pediatrician on Wednesday, not because we thought there was anything wrong, but just to be sure that we’ve explored everything. It's still the right thing to do when your child complains of a very distressing physical symptom. The pediatrician saw nothing, but did order a modified barium swallow study just to be sure. That may be done sometime down the road, but this hospitalization happened first. The visit with the doctor actually did make her feel somewhat better, because there isn’t any kind of growth or anything like she imagined, but she has continued to believe that she’s dying. She says that maybe that’s not how it’s going to happen, but it is still going to happen. She is so convinced that this is just reality, just something she knows to be true, that when I used the word delusion to describe it to the doctor, she snapped, "Stop calling it that! That's not what it is!" 

Meanwhile… On Monday (two days after the swallowing thing started, two days before the ped. visit) we were driving back from her regular blood draw. She was reclined a little in her seat, eyes vacant, mouth hanging open, just looking spaced out. Suddenly, she bolted upright and said, “Mom! The voice is talking!”

Yep. The voice. It’s back, and she’s hearing it often. This is less than a month since we last increased her clozapine, and by a pretty decent amount. So… now we’re looking at not only a major delusion, but also frequent and harmful hallucinations. Oh, and constant terror. The voice is mostly taunting her about dying. It tells her that she is, that only the two of them know the truth, that it’s going to happen soon. It argues with everything we say when we try to reassure her that things really are okay. It also sometimes tells her that she has to kill someone, and that she needs to do it soon, because she doesn’t have much longer herself. She says she has no desire to do that, but it's still hard to hear it. She was miserable already, and now the voice is making it so much worse. 

My poor girl is describing this as the very worst thing she has ever experienced. She says that it's worse than when she's been suicidal. When she's suicidal, she says, she's not afraid. There is nothing in the world worse than being scared all the time. She says that sometimes she thinks that if her death is going to happen soon anyway, maybe she should just do it so she can be in control. She says she's not suicidal, because she doesn't want to die. And she also says that it's more like an intrusive thought than suicidal ideation, and she wouldn't really do it. Still, you can't just not worry about statements like "sometimes I think I should just do it." 

In addition to the delusions, hallucinations, and fear, she is very detached. She usually isn't able to express what it feels like in the moment; only in her better times can she sometimes describe what it's like in her worse times. However, a few days ago, she told me that she was feeling disconnected. She said that despite the fact that she'd been sitting there watching tv for hours, she had no idea what was going on. "Things are moving and people are talking, but I don't know what's actually happening unless I focus really hard." I asked if she was having a hard time understanding what I was saying when I was talking to her, because sometimes she wasn't responding very much. She said, "Yes. Well, I can understand what we're talking about, because I'm talking to you now. But I have to work really hard to hold the thoughts together." She also described, "It feels like when you're really lost in thought, only I'm not thinking." Earlier that day, she had spilled a drink, and then just sat there and looked at it until I told her to get up and get something to clean it up. When we were talking about how disconnected she was, she said, "Like, when I spilled my water earlier, I knew that I spilled it and that it needed to be cleaned up. But my body just didn't move. I don't know why." It was both interesting and heartbreaking to hear her describe how she was feeling, and that she was aware that she was pretty lost. 

I spoke to her psychiatrist on Wednesday. She said that she thought we needed to go to the hospital. She wasn't insisting that we absolutely go at that moment, but strongly encouraged us to consider it. I said that it was so hard, because it had been less than month since discharge, because her birthday was two weeks away. She said she understood, as a mom, what I was saying, but that she just didn't think there was any way she'd make it another two weeks. She pointed out that historically she decompensates very quickly. We discussed that it has been such a short time since her last increase that it's really bad news for it to not be working already. She said that not only is hospitalization going to be necessary, but we might need to revisit the idea of residential treatment in order to really be able to give this mess the time and care it needs. (Acute is designed for 1 - 2 weeks, residential is more like 3 - 12 months.) I asked if she thought it was okay for us to have a little more time to just watch carefully and decide exactly what to do, and she said that was okay, but asked us to have a very low threshold for what more we need to see before we take her. On Thursday, Hope had an appointment with her therapist. We caught him up on everything, and he said that he strongly agreed with Dr T. He said that he thought the hospital was the only option at that point, and offered to walk us from his office over to the emergency department in the same building. From there, we knew that her symptoms were too serious for them to even consider not keeping her.

Here's the current situation: She is in the ED's adolescent observation unit, waiting for a bed to open up. As always, she could end up inpatient in this facility, or in another one, if they find a bed somewhere else first. No changes were made to her meds, because the attending in the emergency department said that he didn't feel comfortable with it. He sees adults, and just didn't want to touch this situation. (An adolescent (which he doesn't typically see)... on a high risk med (that isn't even working at this point)... in an incredibly unstable state... I don't understand why he wouldn't want in on a piece of that fun.) We hope for her to get a bed somewhere soon, so they can start working on fixing things. One thing the ED doc did do at my request is order a clozaril level, so when she does get in we'll know if there's any room to increase it. I'm feeling a little pessimistic about med stuff, because even if they do increase it, how long will it help? We did a sizable increase less than a month ago, and look at her now. And if we don't increase it, or if it doesn't help, we have to start the process of stacking meds and hoping we can find a successful combination. It doesn't look good right now. We'll hope for the best, though. There is always a chance that she'll respond to an increase or added med, and then get a longer period of stability out of it than she did this time. Meanwhile, because we know that it may be harder this time, we have already started the process for admission to a residential facility. We just submitted the paperwork yesterday, so we don't have approval from either the facility or our insurance company yet. Honestly, we're still hoping that we won't need to go that route. We had to get the process started in case we do, though. If we get it approved and have to turn down a bed because she's doing well, I'll be happy to have needlessly sacrificed the hours I spent on the process.

As for how Hope herself is currently doing, I don't have great news. She hasn't improved at all, of course, because we haven't made any med changes. There is a chance that even without med changes, she'd cycle back to a better place eventually, but we're talking months, not days. Right now, she's miserable. She's terrified. She's very sick and self aware enough to know it. The day she was admitted, she kept crying and ranting that it's not fair that so many of the kids there are choosing things like bad behavior and substance use, and she can't choose anything. They're not doing what they should do to get better and get/stay out of there, and she would do any amount of work in the world if only she could affect her situation. That was so hard, because it's true that we're all at the mercy of this ugly beast. In some way, though, I was pleased to see her fury at the situation because somehow that's easier than when she's just heartbroken. The last two days, she has looked detached and broken. I take a card game with me every time I visit, and we play, but she doesn't say much except to answer direct questions. I asked today, as I always do, how her symptoms are, and she looked down and quietly said, "The same." I asked if she's hearing the voice as often and if it's saying the same things and she said yes to both. I asked if she still thinks she's dying and still feels really scared, and her eyes filled with tears as she said, "All the time." I pointed out that she's in a hospital, and asked if it makes her feel any safer to know that there are medical professionals all around her. "Well, in a way, maybe I think that they might have a better chance of getting me back when it happens. But if they can't help, then it happens here instead of at home. I'm not at home with you guys, and I just die in some random hospital."  Oh, my heart. What do you even say to that? My understanding that she is okay, and not in danger of dying, doesn't even stand up to hearing her describe how scared she is and how sad she is that she's probably just going to die in a random hospital when all she wants is to be at home. 

For those of you who are praying people, we sure would appreciate the prayers for our baby girl. For both of our babies, really. The little guy jolted awake from a nightmare that Hope had a bow and arrow and was shooting everyone but him, and was afraid to go back to sleep. He struggles with her illness, too, and I really appreciate how many of you tell me that you keep him in your prayers as well. Right now, though, Hope is struggling far beyond what most of us will ever experience, and we would love if you would all help us cover her in love and prayers. I've told her that when she is at her worst, and her brain can't quite tell what's real and keep itself straight, we will hold the truth for her and keep on taking care of her until she's well enough to rejoin us in the fight. And fight we will! We are working hard to get her back to the best version of herself that she's able to be, and as quickly as possible.