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